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Will I ever get my beautiful life back?


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In a very recent post I discussed all the pain I was in. I wanted to go into some detail leading up to this and to keep this post simple. I found that too difficult so here is my long post about it all.

 

I had taken Clonazepam in very small amounts for years, prescribed for anxiety. I took maybe 10mg in a YEAR! I just took it when I felt an anxiety attack coming on, or maybe a flight for business. In the summer of 2016 I had a routine colonoscopy. Right after that is when my crushing head pains started. After a head CT scan, it showed that I might have NPH, which would require surgery (a shunt put in my head to drain excess fluid). This made me very anxious, so the doctor told me it was ok to increase my Clonazepam to help with the anxiety. It took awhile to get into a neurologist, then longer to get into the MRI and forever to get results back. During this time I was told it was ok to take 1mg /day of the benzo to help keep me calm. The results showed that I did NOT have NPH (therefore nobody knew what was causing the crushing head pain), so I decided I didn’t need the daily benzo anymore and stopped taking it. It nearly killed me but I had been given no advice that abruptly stopping could be dangerous.

 

Note that I was never concerned with it since had taken it for so long ( in very small amounts up until this episode), so didn’t even think about being addicted to it. Well, I found out late that night that I had indeed become addicted. I went to see my neurologist and told him I had become addicted. He didn’t believe me and said it wasn’t addictive. I have found that sometimes women aren’t taken as seriously as men. My women Doctors have concurred with that assessment of some male colleagues.

 

I was on 1mg/ day for maybe 6 to 8 weeks waiting to see if I had NPH. Per instructions from a pharmacist and a psychiatrist NP I started seeing (the neurologist had no clue about benzos), I did a taper, and completed it in about 2.5 months. I know now that was probably too fast, but I just wanted to be done with it. It took another month for all symptoms to subside (including bad chest pain/anxiety and crushing head pain). However, by the end of Jan 2017 all seemed well for about 2 weeks. Then the crushing head pain came back, and has been a part of my hell virtually ever since then. I went to the emergency room a few weeks later when it got to a point I couldn’t tolerate, and told the ER doctor the story. He said it may help to take the Clonazepam again. They also gave me an injection for a migraine, though I told him it was NOT a migraine but total head crushing pain. The injection did nothing. With nothing else to try, I started back on the benzo in low dosage. It did seem to help for awhile. However, I needed more and more to keep the head crushing pain somewhat under control. Finally my GP said to take it regularly, so I started again on 1 mg a day in four 0.25 mg doses.  This helped some, but not for long. Of course I had more sets of MRIs that showed nothing, treatments that did nothing, and drugs that did nothing or only caused more problems ( I got off of them).

The head pain was consistent. The benzos now were doing nothing for it but I knew I was addicted, so did a slow withdrawal and got down to about 1/3 mg a day in mid 2018. I had no other benzo related symptoms except the head crushing pain.

 

Other unrelated problems began, and I was diagnosed with an inguinal hernia in November of 2018, and had surgery at the end of that month (in an earlier post I put this in 2019, but it was actually Nov of 2018). Note also, for several weeks before the surgery the head pains had finally stopped! I figured after the surgery I could quickly then get totally off of the benzos.

 

However, it was immediately after this surgery that all the other symptoms described in my previous post began.. legs not working properly, unbalanced, shaking,pain in extremities, not right in the head, high anxiety and chest pain, etc.  I upped the benzo dosage again as all symptoms continued to get worse, and it seemed to help some. Eventually got back to the 1 mg / day, which I have now reduced to 0.45mg over 10 months since I felt it was poisoning me and the symptoms continued to get worse in any case.

 

My Dr now thinks it could be related to the anesthesia, since both procedures were followed by problems: crushing head pain after the colonoscopy, and everything else after the hernia surgery.

 

Not sure where else to go with this. There is no doubt I am still addicted to benzos, but maybe the anesthesia has a lot to do with what is going on with me as well. All I know Is the pain is unbearable and I don’t think I can take much more of it.

 

I miss my friends and they miss my sense of humor. I miss working out , shopping, cooking, doing for others, creative endeavors and everything that once brought me joy.

 

If you got through this long post, thank you so much for reading it! 

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What a terrible time you've had, I'm so sorry for your pain, it seems as if cascading events have brought you to this terrible place.  It sounds as if you may have found the original cause of your terrible pain, but now it's complicated by the cure's you've been given.  I'm sure the emotional stress of waiting for those firsts tests was awful.

 

Can I ask, is there anything your Dr's can do about the effects of the anesthesia, is this a common thing in their experience?  Is time your only hope for lessening your painful and crushing head pain?

 

I can tell you miss you and the life you lived, I hope you can find the strength to hold on and find a way out of this.  We're here to help.

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Thank you for reading my post. My Dr worked at Mayo Clinic for many years and yes she has seen this before. No answers as to why this happens to some people. It is more prevalent in older people. I’m no kid that’s for sure. I have had several surgeries in my life with one being serious (pituitary surgery) and the other ones minor. I never had a problem with anesthesia before the colonoscopy and then again with hernia surgery. As a side note, I have had hernia surgery before 15 yrs ago with no problem. I’m afraid I’m one of the benzo people that just don’t recover. I think about that a lot. If I can’t recover, what good is it to keep fighting and struggling? Thank you for responding!
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Almost everyone fully recovers from this, there are those who take longer to recover and some who may not fully recover but they do see improvement of their initial symptoms.  These are my observations not based on numbers or data, this is what I see on the forum.

 

I know you're discouraged but I hate to see you give up when there is hope for you, especially if the life you had was beautiful, it sounds like it's worth fighting for.

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Hi Hallmark,

 

That was a very difficult journey.  I’m sorry you’ve suffered.  Whatever the reasons, you have definitely had a hard time. 

 

It’s impossible to say why exactly you have this symptom.  Is it benzos only or a combination or what.  The real goal is to feel better, no matter the reason why you are in this place.

 

In terms of benzo withdrawal, you absolutely can and will heal.  It’s very important not to dwell on staying sick and blaming benzos.  I hope you can reframe your thinking on healing, even while you struggle.  That is when you need it most.  People heal.  Symptoms of benzo use and withdrawal come to an end. 

 

May I ask what are you doing towards feeling better?  Each day .  Do you ever get relief?  Have you tried dietary changes, breathing exercises to reduce anxiety?  Though this may seem almost silly in the face of your pain, they won’t hurt and can help.  If you can manage anxiety, you’ll feel better. 

 

Please don’t despair.  You can get back to living your beautiful life. 

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I’m always in total body pain. The degree can get slightly less but it’s still horrible. What I try to do everyday is at least try to walk a little or I’m afraid I will completely lose the ability to walk at all. I start at our front courtyard and follow the brick pathway around the house to the patio and keep going till I get to the next courtyard and around the pool until I end up back at the kitchen door. I enjoy the cacti in bloom and looking at the mountains. Always beautiful and always changing depending on time of day. it can be exhausting but I do it anyway. Already over 100 everyday so won’t be doing it as much. My favorite thing is the colorful Arizona sunsets. Breathtaking! Simple things can bring a smile and even if it’s only a few seconds it helps.

 

I was also doing EMDR with a therapist until this horrible Covid started. I had never heard of EMDR until it was recommended. It is widely used in PSTD.

 

As far as food, I worked with a functional medicine Dr but she finally said it just wasn’t working for me. I don’t have much of an appetite so I sometimes have to force myself to eat.

 

The reason I sound hopeless in my posts is I just refused to give up and kept trying anything that might help me. I know the body has become so weak that I question how much more it can take. Thank you for your posts.

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Hi Hallmark

 

I lived in Arizona for the first 25 years of my young adulthood. I really miss it at times, but not the 100+ temps. I remember that when the summer is looming ahead, especially if the Winter/Spring was difficult for any reason, it can feel like you missed out on the good part of desert living, and now here comes The Oven. This can really affect how everything feels.

 

I mentally took that walk that you described-- don't give up on that. Even just walking around the outside and inside of your home will do a lot for muscle memory. I'm always amazed at how far the little things can sustain us, especially when they are actually big things, relatively.

 

You're already doing so much to keep yourself strong so that when the day comes, you will be able to enjoy a beautiful life.

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So thrilled to hear from someone that lived in Az. It was 106 today and tomorrow will be 107. I love my home which I found 30yrs ago. One of a kind.My sister calls it the Pondersa but it’s a territorial. Too large now and am unable to walk the steps. Horse property but no one is riding now. I miss the horses. I am in so much pain but I am trying very hard to find anything that gives me pleasure. Gratitude everyday no matter how trivial it may seem. I almost cried that you knew what Az looks like at sunset. Thank you.
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HallmarkFan, I'm right there with you about the crushing head pain (went to emergency room, got a brain scan... of course nothing).  I started benzos 5 years ago and over the last year I started to get the crushing head pain, I also have jaw pain too. 

 

I found out my 'bite' (jaw alignment) was off and was causing a big part of my pain... so I payed a pretty penny to work with a Jaw/tmj specializing dentist to have an appliance put in my mouth to correct my bite.  That definitely improved things... at first.

 

But the crushing head/jaw pain has come back and it rages whenever I'm in withdrawals.  I have tons of other sx too, but that one is front and center.

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Hello Drug Free, you are the only person that has partially described my crushing head pains. Headache is a common benzo symptom BUT not the total crushing skull pain we have. Anywhere there is bone, including cheek bones can be beyond what anyone can imagine.

 

until someone  has felt what feels like a circular saw cutting through your skull, baseball bats, bottles being crushed on your head or a screwdriver through your temple, nobody could possibly know the pain. I have stopped asking WHY...it just is. I have had MRIs ,MRAs and MRVs over the last several years along with every other uncomfortable test Drs could put me through.

 

I wish I could offer advice but I have never figured anything out. It makes no sense to me and I am a logical person. I have to keep going but I admit I have some pretty dark thoughts when I don’t know how to last one more minute.

 

I hope to follow you here to see if you get any relief. Thank you for making me feel not so alone with this horrible, excruciating pain.

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Many times in surgery they use benzos as part of the anesthesia. I don't know if this could be part of the problems you are having. But many people going through wd make sure that that the anesthesiologist uses propranolol for the anesthetic instead of benzos. Could this be why you had problems after going through a colonoscopy and surgery?
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