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Is It Benzo? Adrenal? Vestibular Migraine? Hypothyroid? Where To Start?


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Hi All -- I hope everyone is hanging in there.  It's been awhile since I've been here.  Had to deal with getting lots of tests, and trying to bring in work etc.  I'm back, and not sure where to start with everything.

 

so, I've been feeling very poorly for over 3 years now.  Started with extreme fatigue, foggy thinking, low exercise tolerance, worsening memory.  Then, a year ago, I developed a vestibular disorder, the cause of which is still unknown, after many tests have been run.  I'm trying to decide what area to tackle first, as I have a lot of symptoms, with several probable causes.  Starting in the wrong place, may make things worse, so I'm looking for clues.  I suspect benzo may be culprit or at the very least, contributor to my issues.  I'm scared to death of the thought of the vestibular symptoms getting worse if I titrate as I can barely function as it is (can only work at home)....and not eligible for government support services for various ridiculous reasons.  I'm self-employed with no business coming in, single, no family to fall back on, no $$ in the bank/no assets (have lived off of savings past 6 months).

 

I'm a 50-ish woman, in perimenopause.  I feel dizzy all the time, off-balance (although I can manage a balance board nicely, so it's clearly just a feeling of off-balance), and also have the sensation of being on a rocking boat.  I've had one incident of spinning vertigo (aside from when it was induced via VNG test), and this happened the morning after the VNG test.  I had also jumped lightly on my mini-trampoline the night before....and I had held my arms behind my head while in bed, gripping the head board to stretch (that is when the spinning started). I have often felt like I was about to spin, but the feeling stops short of that.  The absolute worst thing for me is to go into a store.  Awful!  All the lights, sounds, people moving, and size of the space, make me feel like I'm going to pass out. The symptoms started after a cold, after blowing my nose too hard after rinsing with saline solution. My ear hurt and head felt stuffed, and next AM I was dizzy/wobbly. Had a wobbly few moments like this, a few weeks prior, after giving up 5 vials of blood for labs. I also have tinnitus and other weird head sensations.

 

I also have hypothyroidism (with RT3 issues), which has not responded to treatment (cannot tolerate natural or synthetic hormone). Ferritin (iron

stores) on the lowish side, likely adrenal fatigue, and I have been taking .25 mg of lorazapam for insomnia at night, for about 7 years. It's a low dose, but my system is sensitive, so might be equivalent to normal dose for avg person? As of the past month or two, I'm also experiencing high levels of anxiety, doom feelings, and panic attacks as well. I'm not sure if this is due to benzo, or thyroid (thyroid meds have caused this in past when taking too much), adrenal.....or maybe the fact that my long-term  therapist has gone awol on me at at time when i really need support?  (i think she's going through health crisis of her own).  I also have palpitations, but that is consistent with thyroid issues, so.....?

 

I am trying to figure out, since the doctors have not been of much help as of yet, which, if any, of my conditions may be contributing or causing the vestibular issues and extreme fatigue. I have a suspicion that the benzo may be a (the?) contributor, being that it is known to be a vestibular suppressant. But then again, low thyroid could likely also cause problems. I just don't know what to do. Anyone have any experience with any of this? I'd be grateful for your input. I pretty much cannot work anymore aside from small at home projects (I"m self-employed), and I'm finding myself in a very desperate place, unfortunately.  I feel like my life is over.  :(

 

Thank you kindly,

 

AO

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Just stopping by to let you know you are not alone.  I have been having vestibular problems since Feb 2011.  I also had a cold and sore throat and woke up one day with vertigo.  I have had a CT scan and an MRI which both came back normal.  I have had blood work several times with all coming back normal.  An ENT diagnosed me with vestibular neuritis and said it could take months to get over.  My symptoms started about 10 days after I stopped clonazepam so I suspect that is what the culprit is.  I understand how frustrating this can be.  There have been times I don't know how I can make it one more day.  I have recently been laid off work for 6 weeks which is a blessing right now because I need to rest and try and get over this thing.  I have days when I don't have as much problem with balance and other days when I can't hold my head straight or stand up without feeling like I am gong to tip over.  I have read balance and dizziness is a common symptom of benzo withdrawal.  It doesn't say how long it lasts but I have read for some it lasts the whole withdrawal.  I hope we are not those that it lasts that long.  Hang in there. 
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I went to read your posting history as I was a little confused about the time lines.  I decided to come back to this post and just ask you directly.

 

Did you start having symptoms while taking the benzo as it was prescribed?

 

Did you taper or cold turkey off it, or are you currently in a taper, and at how many mg's?

 

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Just to let you know, I was diagnosed with fibromyalgia while on benzos.  I was actually having tolerance w/d symptoms.  My GP and I also suspect that the reason I went into Adrenal Crisis from the glucocorticosteroid injections I received at a pain clinic was because the benzos affect the HPA Axis (Hypothalamus/Pituitary/Adrenal Axis).  If you do an internet search "benzodiazepine HPA Axis"  you can find many articles related to this.

 

This did not just effect my cortisol level, but my DHEAS, Estrogen, and Testosterone levels were extremely low.  Most people are unaware that our adrenals produce a significant amount of our estrogen.  I was thrown into a false menopause when My HPA Axis was shut down inadvertently by the steroid shots.

 

While in benzo tolerance w/d, two of my blood test for various vitamins came back low as well -  Vitamin D and Methymalonic Acid or MMA , which is the best test to check for B12 deficiency (A serum MMA test will come back high if your B12 is low).  Whether benzos caused this as well, I do not know.

 

I have read that people have thyroid symptoms during benzo w/d on various benzo w/d symptom lists, which incidentally include a lot of the other various symptoms you mentioned.

 

The point I am trying to make is that it sounds like you are doing what we did when I was in Tolerance w/d.  Trying to look at each symptom or set of symptoms individually to try to determine their origin when infact, at least in my case, they were all caused by one thing...benzos.

 

I an not telling you to not do anything your doctor deems necessary, I just want you to be aware of what happened to me.

 

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Hi armslynd59 -- thank you for the support and for sharing your experience, and so sorry you are going through this as well.  It's such an awful feeling, and it makes one feel so vulnerable and out of control.  My vestibular symptoms started in April 2010, and improved a little bit after 6 weeks, only to come on even stronger after having the VNG test done (where they introduce hot/cold air into ear canals). Then I think I started feeling a tiny bit better again after a few months, and then worse again, and then a little better for a short time, and then a lot worse in December, up and down, and now it's really bad again.  And when I say "better" I definitely don't mean good!  Just a bit better, to where I feel like I can drive myself to the local store and back, and pick up a few things.

 

I'm curious to know if vestibular rehabilitation exercises work if symptoms are caused by benzos.  Anyone out there know?  I know that benzo's are vestibular suppressants, and are actually used to treat vertigo for this reason, but it makes sense that if one's vestibular system has been suppressed via benzo, and one is going through withdrawal, vestibular symptoms would appear.

 

Wow, this sure is one big bag of "not fun!".  I too hope that we are not of the "long term" sufferers type.  All the best to you!  Keep in touch if you like!

 

AO

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Hi Perseverance - Thank you for your response.  Answers below:

 

Q. Did you start having symptoms while taking the benzo as it was prescribed?

 

Started taking lorazapam 7 years ago, .125 mg at night only, for insomnia.  Did not raise dose for about 4 years I'd say.  it was the only thing that helped me sleep, that I could tolerate (oh the irony).

 

3 years ago started getting extreme fatigue, foggy brain etc.  Thyroid showed as being a bit low.  Could not tolerate thyroid meds.  Got more tired over next 3 years, and for more and more of the day. 

 

Probably started taking tiny bit more 1-2 years ago, so that now i'm taking .25, at night only (half a .5 tab).

 

Did you taper or cold turkey off it, or are you currently in a taper, and at how many mg's?

 

I have not begun taper yet.  Have all the supplies, but feeling scared and uncertain...due to being single, not having business coming in, no family that can help, etc etc.  I'm currently at .25 (actually a bit less, but don't know the numeric value).  I'm guessing I may be in tolerance withdrawal?  Benzo still does help me sleep though.  and I don't really feel any different when i take it.  does not relieve symptoms for ex. 

 

thanks!

 

AO

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I am re-posting my previous post because I wasn't' sure if you read it.  Just skip it if you did.  Seems you were on a very low dose, but some people have had problems even on low doses.

 

Just to let you know, I was diagnosed with fibromyalgia while on benzos.  I was actually having tolerance w/d symptoms.  My GP and I also suspect that the reason I went into Adrenal Crisis from the glucocorticosteroid injections I received at a pain clinic was because the benzos affect the HPA Axis (Hypothalamus/Pituitary/Adrenal Axis).  If you do an internet search "benzodiazepine HPA Axis"  you can find many articles related to this.

 

This did not just effect my cortisol level, but my DHEAS, Estrogen, and Testosterone levels were extremely low.  Most people are unaware that our adrenals produce a significant amount of our estrogen.  I was thrown into a false menopause when My HPA Axis was shut down inadvertently by the steroid shots.

 

While in benzo tolerance w/d, two of my blood test for various vitamins came back low as well -  Vitamin D and Methymalonic Acid or MMA , which is the best test to check for B12 deficiency (A serum MMA test will come back high if your B12 is low).  Whether benzos caused this as well, I do not know.

 

I have read that people have thyroid symptoms during benzo w/d on various benzo w/d symptom lists, which incidentally include a lot of the other various symptoms you mentioned.

 

The point I am trying to make is that it sounds like you are doing what we did when I was in Tolerance w/d.  Trying to look at each symptom or set of symptoms individually to try to determine their origin when infact, at least in my case, they were all caused by one thing...benzos.

 

I an not telling you to not do anything your doctor deems necessary, I just want you to be aware of what happened to me.

 

 

I am very saddened to hear how alone you are. 

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Hi Again Perseverance -- Just read your second note.  Very interesting.  This is the type of info I'm seeking, as I have suspicions along these lines.  I will seek out articles on HPA axis and benzos.  I strongly suspect it may all be due to benzo.  I've been told that I might want to support my adrenals first though, so as to tolerate WD easier, but I'm not sure what I think about that, as it would involve taking hydrocortisone or adaptagens, and I don't know.....seems like it might be a can of worms?  But others state I won't get better unless I support adrenals first.  Do you have any information/experience with this?

 

Interestingly, I had been diagnosed with FM also, many years ago.  I however, was not on Benzos at the time of the diagnosis, although my doc did eventually put me on them for awhile during that time, for sleep.  I think i might have taken them for a couple of years at that time, then got off of them for awhile, then when my 20+ year relationship broke up, got back on them and here I am.  I do not have FM, BTW.  I suspect my symptoms may have been due to sluggish thyroid and stressful situation at that time.

 

I feel like I'm teetering on the edge and may fall off at any moment!  I have Kaiser unfortunately, and although they have run many tests and it has cost me very little for this, they don't know what the heck to do with me.  I share theories with them, and the look at me like I'm crazy.  I don't know where to turn to for medical guidance through this.  I'm in Los Angeles area BTW.

 

Thank you!

 

AO

 

 

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yes, very low dose, but i'm pretty sensitive in general, so maybe not low for me?  or maybe that's why it's taken 7 years to get to the point of feeling this awful?

 

yes, the alone thing is tough.  My parents immigrated from Europe and only had one child, me....so no extended family whatsoever.  My dad is elderly and we do not live close to each other, unfortunately.  My marriage ended 7-8 years ago, and I've been busy growing my business since then and staying afloat, so no time for dating.  I do have some really great friends, but they have their own things to deal with, or live a a bit far away, so I can only count on two of them at any given time, which I'm very grateful for.  :)

 

But, being self-employed, and not being able to run around like i'm used to, and work on projects and be out there in the world, is really taking it's toll.  I go a little nuts if i'm not actively engaged in creative projects (i'm a designer) and working with other people.  :(

 

AO

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I haven't had a lot of support through this ordeal either.  I am also divorced and don't date right now.  I can't imagine trying to keep a relationship afloat while feeling so awful.  My kids don't really understand what I'm going through and I haven't discussed it with my parents because they just wouldn't get it either.  My doctor has been less than supportive.  He thinks withdrawals should only last 3 weeks.  I just deal with it by staying in bed when I have to and venting on BB and reading other people's experiences.  This site has kept me from feeling like I'm going insane.  At least I know I am not alone and this won't last forever.  Today has not been a good day.  It was nice to read your story because it let me know I am not the only person suffering from this crazy imbalance problem.  I am not glad that you are suffering also because I know how miserable it is.  Let me know if I can be of any support to you. 
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Hi armslynd59  -- Sorry to hear it was a bad day, and also sorry that you're going through this with out a lot of support as well. I know what it's like and empathize.  Yes....crazy imbalance problem indeed.  It literally does make one feel crazy!  If I hear one more person say, "well, you look great!", I think I might lose it!  I just want to feel good now.  There are times I really do feel like I'm going insane.  The panic attacks are getting scary now too, and the doom feelings.  I just never thought I'd be in a situation like this.  You know?

 

anyway, you're definitely not alone.  These vestibular symptoms are crazy making.  really makes one feel vulnerable and out of control.

 

please feel free to email me anytime if you want to chat/support each other.

 

Best!

 

AO

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I don't know what your cortisone level is.  The best way to check it is fasting, first thing in the morning.  If you get a fasting AM Cortisol test done I would also have them run lab tests for serum DHEAS, Testosterone, Estrogen and Vitamin D.

 

DHEA is a hormone produced by the adrenals.  The Hypothalamus tells the adrenals to synthesize it into either Testosterone or Estrogen, depending which one the body needs more of at any given time. The DHEAS test (versus the DHEA test) is the best test to check this.

 

You can go to an endocrinologist with your concerns over thyroid and adrenal problems as they are both part of your endocrine system. An endocrinologist could run an ACTH test to check you HPA Axis function.  I would think they would want to run it if your AM cortisol was low.

 

If your cortisol is only slightly off, be careful how much Hydrocortisone a doctor prescribes you.  It is best to ask you Family Doctor who is the best Endocrinologist in your area, as many MDs and Endocrinologists over prescribe Hydrocortisone and can get you into a whole new set of troubles.  Anything over 10 mg is excessive according to the best Endocrinologist I've seen so far.

 

Keep in mind that any time you add a synthetic hormone to your system your body will react by stopping the production of its own natural hormone.  That is why I would only take Hydrocortisone if absolutely necessary.  I would AVOID DHEA or Adrenal Extracts you see in health food stores and Vitamin shops.

 

So what can you do to support your adrenal function?  Take a good Vitamin C supplement.  Most of the Vitamin C in your body is located in your adrenals.  I would not go over 1,000 mg as you can develop kidney stones from too much Vitamin C.  If your stomach is sensitive, Twinlab makes a stomach friendly one called "Gentle-C."

 

Your adrenals also use a lot of B5, also known as Pantothenic Acid.  However B vitamins tend to work in concert with each other so it is best to take a B-Complex with 50 mg of all the B vitamins plus an additional 50 mg of B5.  I take these myself, however, keep in mind that some BBs said B Vitamins aggravated their w/d symptoms.

 

I hope that gives you some direction and a place to start.

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Hi Perseverance -- Thank you kindly for the information.  I've addressed most of what you mentioned, but will look through to see if there is anything I've missed.  I've had cortisol tests, via saliva, multiple times.  I'm low in morning, lowish at noon, ok in eve, and high at night...if i'm remembering correctly.  I've been trying to get ACTH test via Kaiser but it's been a bit of a logistics issue.  Will get there eventually. My DHEA was ok last time it was checked (not sure if i checked dheas or dhea), B12 too, and Vit D.  I take Gentle Vit C and B vitamins.  My estrogen is within normal range but I show signs of high estrogen.  I take bio progesterone. 

 

I see an endo regularly (she is also a DO) and have tried various treatments.  The problem is that I cannot tolerate the thyroid meds.  My heart races and I get very anxious.  And I've started on really low doses too.  I also have an RT3 issue, so tried taking T3 only to clear the T4 but also cannot tolerate T3 so that I can take enough to do anything.  All this made me start wondering if the benzo is interfering with everything.

 

Yes, I too am leary of hydrocortisone for the reasons you mentioned.  Don't need a whole new mess!  I did try Dr. Wilson's adrenal support for some time but it did not help so i gave it up.  I tried isocort and adrenal adaptagens but wow, my body shuts down at the slightest hint of any of that stuff in my system.  can't move!

 

I actually just recently started having problems with Vit B so it's interesting that you mentioned others have been aggravated by it. It has quite suddenly started to aggravate my stomach and it won't stay down, so I gave that up!  Not fun.

 

I've given up gluten, soy, milk....i don't drink coffee, alcohol or eat foods that are not healthy.  i'm at my wits end with all this! 

 

Thanks again and I hope we all feel better soon!

 

AO

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During the last 10 years or so that I was in tolerance w/d I became ultra-sensitive to foods, perfumes, cleaners, and virtually every prescription and OTC med on the market.  When it all started I was on a relatively low dose of benzos.  Perhaps this is because benzo w/d heightens the nervous system.  Something to think about.
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I would totally agree with your thought about the sensitivity being due to benzo w/d heightening the sensitivity of the nervous system.  i'm so sensitive now i can barely withstand going outside my home.  sights, sounds, smells, it's maddening.  And i already had a very sensitive nervous system to boot!  I'm an "HSP"....."highly ensitive person", per Elaine Aaron's book of the same name.  She's a phd and did a lot of research on people who are sensitive in general, and she continues to do so.  I'd be curious to know if you fit the criteria for her model as well.  You can read about it at hsperson.com and take quiz if you have interest.  It seems that everyone I've met that is sensitive, ends up taking some kind of meds, and then it turns into a viscous cycle. 

 

Curious.....do you have extreme fatigue?  I'm so tired today that I can barely move.  The panic is coming on again as well. Ugh. 

 

I wonder if I should just give up on trying to support thyroid, adrenal, or anything  else until I'm off of benzos.....

 

AO

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Yes I have days of EXTREME fatigue.  Yes I think it will be difficult to sort anything out until you are off benzos.  I will check out the hspersons website.  One of my family members has multiple chemical sensitivity, so I might share it with her as well.
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Well, I took the quiz, guess I am not a highly sensitive person.  My senses have only been heightenend by benzo w/d.  Just curious, did you check some, most, or all of the boxes on the quiz?
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wow, that's interesting.  so the benzo is completely responsible for your current heightened state of sensitivity.  hmmmm....i wonder if HSP's in their normal state of being, have something similar going on in the brain/nervous system, as do people w/d from benzo?  Something with GABA maybe?

 

regarding the quiz, i checked the vast majority of the boxes, as did my father.  we have both always had what we like to call "super senses", in that we seem to hear, taste, smell, see EVERYTHING...all the subtle details.  it's like being a radar dish for all that's going on around.  it's a double edged sword.  brings lots of good things with it, but way too much stimuli coming in and it's easy to get overwhelmed.  and now with this benzo thing....yikes!  i'm really scared! i have a handful of HSP friends, and they have a lot of systemic type issues too.  

 

BTW, my ears are roaring like mad today (this is on top of the ringing).  have you ever had that symptom? 

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wow, that's interesting.  so the benzo is completely responsible for your current heightened state of sensitivity.  hmmmm....i wonder if HSP's in their normal state of being, have something similar going on in the brain/nervous system, as do people w/d from benzo?  Something with GABA maybe?

 

regarding the quiz, i checked the vast majority of the boxes, as did my father.  we have both always had what we like to call "super senses", in that we seem to hear, taste, smell, see EVERYTHING...all the subtle details.  it's like being a radar dish for all that's going on around.  it's a double edged sword.  brings lots of good things with it, but way too much stimuli coming in and it's easy to get overwhelmed.  and now with this benzo thing....yikes!  i'm really scared! i have a handful of HSP friends, and they have a lot of systemic type issues too.  

 

BTW, my ears are roaring like mad today (this is on top of the ringing).  have you ever had that symptom? 

 

I think she should have the following question on the quiz "Are you currently taking/tapering off/or in withdrawal from Benzodiazepines?"

 

I thought the same thing about the GABA.  Perhaps there is some sort of genetic defect that effects GABA transmission responsible for HSP, and for that matter other related illnesses like Multiple Chemical Sensitivity or Fibromyalgia.  Maybe it's hereditary being that you and your Father both are HSPs?  Does the HSP website have anywhere you could propose this possibility to the researcher?

 

My ears feel like I am going through altitude pressure changes quite often which sometimes creates a 'roaring' sound.

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Seriously!  that question should be on the test.  I belong to an HSP yahoo group, and have been wanting to post a few questions about health related things, so I will post a question in regard to benzos, and see what comes of it! 

 

I think there must be a connection of some sort in regard to GABA.  Interestingly, some years ago, i was diagnosed with fibromyalgia, and had the classic symptoms.  i pulled myself out of that with lots of hard work and persistent denial of the label/limitations, but was put on benzo for sleep at tail end of that ordeal.  did great for a few years, no more muscle pains etc, got back to playing drums and doing heavy gardening work, but then started to feel crummy a few years ago with exhaustion, foggy brain, and all that. 

 

you have the pressure thing in the ears too, huh?  sorry to hear that.  i have it too.  it's very annoying/uncomfortable.  i have a lot of pressure today, and likely hence, the roaring.  I have that "full ear" feeling.  Ugh.

 

I've never seen a contact address for Elaine, unfortunately.  I suspect she would be inundated with various questions by the HSP community!  I know I would have questions and would email her! ;)

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Seriously!  that question should be on the test.  I belong to an HSP yahoo group, and have been wanting to post a few questions about health related things, so I will post a question in regard to benzos, and see what comes of it! 

 

That should be quite interesting.

 

I think there must be a connection of some sort in regard to GABA.  Interestingly, some years ago, i was diagnosed with fibromyalgia, and had the classic symptoms.  i pulled myself out of that with lots of hard work and persistent denial of the label/limitations, but was put on benzo for sleep at tail end of that ordeal.  did great for a few years, no more muscle pains etc, got back to playing drums and doing heavy gardening work, but then started to feel crummy a few years ago with exhaustion, foggy brain, and all that. 

 

Sounds like the typical benzo course of destruction.  No one is immune.  Benzos eventually start widdling away at your physical and mental health.

 

I've never seen a contact address for Elaine, unfortunately.  I suspect she would be inundated with various questions by the HSP community!

 

No doubt!

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