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Kinda Pissed, Does Anyone Ever Find Peace?


Zap
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I've been having a really bad day today, symptoms abound and constant migraine aura. Somehow I found the strength to teach a class this evening, as it is about the only thing I can really enjoy anymore. Just thinking about trying to go back to work puts me into a downward spiral. Anymore I'm pretty unreliable, one day I'm great and try to do 10 days worth of work for fear that the next day will be worthless. It usually is, and a few more days for that matter.

I got a call the other day from the migraine neuro's office - my EKG was finally received, but we can discuss it during my appointment - not until early/mid-October. As if I'm going to wait that long. Next day I feel well enough I'll be driving to the local hospital to request disclosure of the test results. Apparently it isn't bad enough to tell me now, but it surely can't be normal either, or they would say that. I was told not to up my beta blocker. Hmm, okay - definitely something is up.

I feel like I haven't really gotten much better than this all started over a year ago. I've been off work since July '11, yet the disability insurance apparently thinks this is all a big joke. I'm waiting for the results of my appeal, but it will more than likely be denied. The internist consultant said I could work with chronic migraine with no problem, HAHAHAHAHA. What a pompous ***. I can totally feel those of you that get dealt this ** - the arrogance of these "medical" practitioners is just immense. I seriously think that most of them would do themselves in after a day or two, let alone a week of dealing with what some of us have put up with for a long time...

I guess, at this point, that all I really want is to have a plan for the future or the ability to have a doctor that can actually help me seek further answers. It is really getting old to be in the constant state of waiting, waiting, waiting to see if someone deems my suffering to be enough to warrant help. This is independent of my employer's misunderstanding and request for me to not come back until "you can keep a normal schedule". That, sadly, just reeks of discrimination in so many ways.

I guess at this point, I'm curious if anyone has actually had successful treatment that has rendered them better off than doing nothing at all. With my knowledge of alternative remedies, I've so far not had any improvement over juggling things to keep my autonomic nervous system closer to balanced than doing nothing. The testing, doctors, and meds, if nothing else, have made me more incapacitated than I was before. They say that ignorance is bliss, they might really be right.

Sorry for having to get into a hardcore rant, but I've just been really beside myself lately. This definitely isn't the person I used to be. Maybe knowing what is wrong with me is worse than using my inner strength to fight the unknown. I mean, I don't even have an ANS neuro anymore that is trying to work with me. There has to be a better way than this, that's for sure. I can definitely understand that most, if not all, others that don't have to be here would likely be out enjoying life. I'm just kinda curious how the rest of you feel about things.

If anyone has a recommendation for a helpful doctor in the greater SE Wisconsin area, I'm all ears. I'd like someone that knows at least as much as I do or more about this for a change, even if that is hard to find. I'd just love even part of my life back, if not all of it.

Thanks again for listening - I'll keep researching with the hope that someday we might find something to bring us all some peace. If we don't have hope, then what really do we have?

-C

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Well, feeling a bit more my "normal" self today, thankfully. That flare up just seemed to come out of nowhere, and they can definitely be rough to deal with. I didn't manage to get anything done yesterday and I pretty much just sat around. I've always been one to keep myself busy and doing things, so that probably is one of the more difficult things to deal with.

While my frustration is definitely reflected above, I was fairly serious about many of the things I said too. I do feel like all of the meds I've been trying end up giving me more side effects than quality of life improvement. The Propranolol has been the most beneficial thing so far, yet I have to wonder if it is making my insomnia worse. At this point, I guess my biggest problems are migraine/aura, insomnia/sleep schedule, and sweating. If I could get these mostly under control I probably could have a bit more stability, and maybe do some work part-time, if nothing else.

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I completely relate to your frustration. Once I get home from work which is hard enough to endure, i barely have enough energy to make my son dinner and just sit on the couch while he tries to convince me to play toddler activities. He always asks me "Mommy's sick?" I have 99% bad days....my boyfriend is embarrassed that I chose to ride a scooter at the grocery store. I feel so bad for myself but also sad that my son and boyfriend suffer too becuase of this. Really hard to stay positive....I'm not on all the meds you are because couldn't tolerate proponol (it made me feel stoned out of my mind!!!) even on half of a small dose I was prescribed. I mostly take vitamins, gluten free and drink lotsa fluid, try not to stand up too long. I would say in the last approx year I have had about max 2 weeks total of days I felt somewhat regular. But then there is the knowing that the bad feelings will come back always in the back of my head. Anyway, I drink a coctail in the evening and it makes me forget a little about feeling so icky. From what I read from Issie's posts she has been going through issues for a long time so if she can have hope then I guess I should work on thinking more positive too.

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Hope is what I live for :) Have you had a sleep study? I had insomnia so badly, that I was tested for sleep apnea and diagnosed with it. It's amazing the difference it has made for me to have a Cpap to sleep. It's changed my life!! I was always so fatigued. I have also added supplements to help my energy level, and found out I was deficient in D3, so I've increased my dose of vitamin D, as well. All these things including my meds, and exercise all have improved my days. I still have dysautonomia, but I'm functioning better. Don't give up...We are here for you...Praying for better days.

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Yes, there is lots of hope. I have gotten a lot better through the right meds, followed by exercise. I started to feel better after about a year, but it was 4 years into it (when I was tired of side effects from BB) that I decided to try Paxil, which made me functional. So I think if what you are doing isn't working, it makes sense to keep trying.

I were in your situation, I think I'd feel exactly the same way you do. It is frustrating to be trying so hard, not feeling better and not getting much help from your drs. I hope you are able to find a better dr and get on the right treatment plan.

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Thanks Angela, glad to inspire you to keep up the fight. And yes, a positive attitude is more than half the battle.

Zap, I have to agree. I think most of the RX meds that I've tried, the side effects have been worse than the help that they gave. You have to decide which evil is worse. Which thing gives more benefit - rather than more heartache. As you know, I'm into alternative things more than regular western meds. But, if you can find an RX that makes a difference I'm not against the help. I have found a few meds that I have stuck with ---but, I have a whole baggie full of stuff that I just couldn't take. There is a whole lot of trial and error with figuring out how our bodies work and how they react to what we try to do for them. We have to pay very close attention to our reactions and sort it all out.

I also have sleep apenea and a CPAP has been of great help to me. Getting proper O2 to the brain is very important. I have found that the diamox is helping with the central sleep apenea and my O2 levels are staying higher with it's use. I'm only using it at night now. I find that I really have to watch my PH levels - as it will make you too acidic and that is almost worse than the POTS. But, baking soda will get you in blance pretty well with that.

One thing that has really helped me to relax and sleep better is magnesium. That will help me to relax and turns my brain off better. I'm like you though - up until wee hours in the am and then sleep later in the early morning. Can't seem to get my time clock re-set either.

Those bad days - really do take their toll on us and we start to feel like - we just can't do this any more and wonder if it will EVER get better. IT WILL!!!! We are always in a state of flux - nothing is for sure and there are many, many ups and downs. We have to find the good in a day and not dwell on the bad. There is always something in that day that we can be thankful for. Maybe, the sun was out and we sat on the patio watching a bird play in the bath for an hour - or we saw a hummingbird getting nectar from a flower. Pay attention to the little things around us ---and then there is enjoyment in life ---despite the other issues we have.

Glad you feel better today. Life is good ----we woke up!

Issie

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Issie, I have been in contact with Dr. Driscoll as well, she says she is working hard to get her work out there. She is also pretty uplifting so when I get an email from her it makes me feel better:) Hopefully she has the solution. That's what got you started on the diamox, correct? I believe I read that in one of your earlier posts plus I go on her website too, prettyill.com

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My sleep doc told me that Propranolol destroys your body's natural melatonin, so YES, it can make your insomnia worse. I have a genetic circadian sleep disorder where I don't naturally fall asleep until early in the morning. Taking a BB first thing in the morning and melatonin at night has really helped artificially reset my body clock.

I was stabilized using Western meds, but never got "better" until I started seeing an Oriental Medicine Practitioner and using Chinese herbal formulas. I've made more progress using them with fewer side effects than I ever did with pharmaceuticals.

As far as finding peace...that you have to find regardless of your circumstance, for both the good and bad days (also, peace does not equal a cure! You can have peace in the midst of illness!)

Edited by firewatcher
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There are many ppl that have found help through treatment. It is a matter of finding the underlying cause and doing the best to work with it

I have started to improve some this year with meds, exercise,diet,& supplements more than I have the past 14 years.

Did you say you are in WI? I believe there is a dr in milkwakee, Dr Chemilsky.

There is also a dr in buffalo NY, Dr Svetlana Blyithsteryn that does phone consults & is supposed to be very very good. Maybe that's an option for you.

I am 27, single, unable to work & living my parents. The future is what scares me most. How am I going to build my own , indepednat life? Will I somehow find a career? A man? Or stay this way forever?

I don't know but I have to have faith that things can improve & work toward that. There's always going to be bad days and downs days that we need to allow ourselves. We have to get those feelings out. It's what you do with them that matter, once you feel them are you ready to get up & try again. It could be what makes the difference. Hang in there

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from what i've been told you can demand answers to results regardless good or bad over the phone....you don't have to wait. It's your right. I would just call them (your doc) and demand them. If that helps with your peace of mind, ya know? They probably just want you to wait so you have to pay co-insurance to tell you the same thing they can tell you in 2 minutes on the phone. If your doc's office does not comply I would look for a new one. Been there, done that.

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Angela, yes I am doing the diamox - as Dr. Driscol recommended. I have found that it helps the head pressure that I have and my eyes don't hurt as bad. I'm still not sure that it has really helped my POTS that much - but, it is supposed to help more with time. If it is true what is thought with EDS/POTS/MCAS - then the pressure relief that the brain should have will take time. I'm still in a trial run with it. Not ready to give it up yet. I did have to drop it down to only once a day and that is better for me. My bp and hr are better - for sure.

There you go Zap - your guessing about the propranalol must be right. We have to listen to our bodies and figure out what is acceptable and what isn't. Maybe, the way firewatcher is using her bb will help you too. Although, I can't take melatinion - it makes me feel awful. I get some really weird sensations with it and feel like I'm falling and my sleep isn't restful with it. But, I know some who like it. Some people have problems with it causing depression too. My father tried it and during the day, his body would stay in a depressed state - instead of reviving up in the daytime. He had to go off it. Funny, how sometimes genetics play a big part in how we react to things.

One of my docs is making me wait for test results too. But, I figure no news, must be good news or they would have had me come in sooner. She may be waiting to see if things improve before my next appt. as I'm to have some more test 2 weeks before I see her and she should have the results when I get there.

Issie

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to step in, when i had my first eeg the neuro didn't call me and tell me the results were abnormal untill his office called about 2 weeks later and said he wanted to see me in 1 week...then at that appt. he prescribed me keppra for siezures he thought I might be having (in which case I should have been told immediately in my opinion, but i figured no news was good news) and then, when I did see him he wanted to put me on bb immediately and told me to go to cardio.....never mentioned until that appt. that my hr was messed up as well as the brain waive slowing according to the 24 hr hart holter. so....my thoughts are always if your doc can't take 2 to 10 minutes to have a phone convo with you within 3 days time of request about what's going on or what they think is possibly going on then get a different doc and always, always demand copies of all info for tests you have done, not just the doc's interpretation I ran into that problem once. when i did go on a bb it made me sicker, not till the 2nd day, but def not cool with my body. so there you go, in my case. But, not hating on my first neuro, maybe he was trying to figure it out until I figured out on my own VIA INTERNET and getting a bp and hr monitor and then his answer was "I dont treat pots". There you go....But at least I figured out that's why I shake/tremor and have vision/hearing issues and anything stressful triggers me immensly...i think i spelled that wrong.

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OK - wow, thanks for all of the responses first of all! I've been busy for a few days and am trying to play catch-up.

I had a sleep study early last year - it came back normal for the most part, except a severely delayed sleep onset (3x what is considered normal). I do suspect that I have a circadian rhythm disorder, but I wasn't tested for that. My sleeping problems have gotten worse as I've added a few meds and changed them up. I don't think they are helping, for sure.

I'm taking D3 after being diagnosed as low. I need to have a test to check up on it and will insist on the full D panel to assess conversion into active D3 in the body. The autonomic neuro I was seeing suggested exercise, but the meds he had me on were making OI and other things come out of the woodwork. I've done exercise in stints to see how it affects me - I feel better getting exercise and getting out a bit, but it doesn't really change my neurological issues as far as I can tell. So it is a nicety, but not really having much effect otherwise.

I've tried melatonin, though it was making my vivid dreams even moreso. It also made me sleep SUPER long. We're talking like 12+ hours of sleep, so I stopped that soon enough. I've wondered if I should try another BB, but since it is being used for migraines too I know others aren't as effective for that. It really seems like a mixed bag.

One of the biggest battles I've been fighting for a while is to find peace. I've been through a lot, and my work-life situation was only making things worse anyway. I guess you could say I've had more peace, in some ways, in the past year that I've been off than in a while. That said, I really need to find a way to have a normal life. I've been de-cluttering and getting rid of junk, which I think helps me emotionally, too. I've got a lot on my plate still, but eventually need money too. I've lacked stability through family issues and such for a while, so maybe if things are calming down a bit I can, too.

It is a shame, as the propranolol is helping me and keeps me more balanced through all of the crises, but I think there is something else lurking out there, too. The search continues. I'm planning to drive to the hospital today to get my test results myself. All these stupid consent forms are a pain.

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Zap,

I take a baby dose of Propranolol (20mg) and only in the morning. The melatonin is a baby dose too (1.5mg) and it is (according to my doctor) supposed to be taken 12 hours before your targeted wake-up time. I take mine at bedtime only because that is what works for me. My son was recently diagnosed with DPSD (delayed phase sleep disorder) too and he takes melatonin at dinner since he has to get up at 6 for school. Lack of sleep was awful for my migraines, it is a well known trigger.

Good luck with the peace part!

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I would like to add to some of the earlier posts here to.

I know those feelings all to well this year, i finally had the diagnosis of Pots a year ago and in my desperation and sheer "frustration" as Zap called it, when one drug wouldnt work i went straight to the next. I have ended up at the end of this year being so sensitive to ANY drug through what i believe you could only call killing my system with meds.These oral meds didnt help or agree with me and so i have decided to stop any new treatments for atleast a couple of months because i feel my body needs a break.

I am of course stuck between a rock and a hard post, i have daily chronic migraines and a stupidly fast heart rate, but i believe taking too many drugs in too short a space of time has done more damage than good, those original benefits i found relief in particularly with the "side effect free" botox and nerve blocks has been a waste of money, where i have been on CCB'S, Lyrica, and many more all to distrupt my headaches and heart rate even more. Im very much the sort of potsie who when i have a bad reaction its days in bed and long recovery.

Im giving myself a break for a while and detoxing on Milk thistle and homeopathic treatment whilst i await more tests in other areas to try and find why i havnt been doing well...

But your words of Frustration ring true to me, you are frustrated becuase you want the meds to get your life back and yet they can sometimes make things worse. I think thats what people dont understand half the time. There is no quick fix to this.

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My neurologist diagnosed me with "Chronic Daily Migraine/Transformed Migraine," which is by far my most disabling symptom. Meds have not really proven effective for this or have stronger side effects than the headache. I've had acupuncture for over a year, which helps, but has not solved the problem. I am currently trying a "back door" route for my headaches that involves old foods and cutting edge science...alteration of the gut flora. My current attempts are with Miso which contains kojic acid:

Chem Pharm Bull (Tokyo). 2010 Oct;58(10):1353-61.

Kojic acid derivatives as histamine H(3) receptor ligands.

Sander K, Kottke T, Weizel L, Stark H.

Source

Johann Wolfgang Goethe University, Institute of Pharmaceutical Chemistry, Biocenter, ZAFES/CMP/ICNF, Frankfurt/Main, Germany.

Abstract

The histamine H(3) receptor (H(3)R) is a promising target in the development of new compounds for the treatment of mainly centrally occurring diseases. However, emerging novel therapeutic concepts have been introduced and some indications in the H(3)R field, e.g. migraine, pain or allergic rhinitis, might take advantage of peripherally acting ligands. In this work, kojic acid-derived structural elements were inserted into a well established H(3)R antagonist/inverse agonist scaffold to investigate the bioisosteric potential of γ-pyranones with respect to the different moieties of the H(3)R pharmacophore. The most affine compounds showed receptor binding in the low nanomolar concentration range. Evaluation and comparison of kojic acid-containing ligands and their corresponding phenyl analogues (3-7) revealed that the newly integrated scaffold greatly influences chemical properties (S Log P, topological polar surface area (tPSA)) and hence, potentially modifies the pharmacokinetic profile of the different derivatives. Benzyl-1-(4-(3-(piperidin-1-yl)propoxy)phenyl)methanamine ligands 3 and 4 belong to the centrally acting diamine-based class of H(3)R antagonist/inverse agonist, whereas kojic acid analogues 6 and 7 might act peripherally. The latter compounds state promising lead structures in the development of H(3)R ligands with a modified profile of action. PMID: 20930404 [PubMed - indexed for MEDLINE]

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firewatcher - thanks for the information! I'm currently on 20mg AM and 20mg PM with the Propranolol. I had briefly tried a larger amount, but the fatigue and side effects crept up on me. The Melatonin is 3 mg. Maybe a smaller amount would be better, wouldn't be the first time for me!

My research started with involvement of the gut flora, so I do believe this plays a part, somehow. It is entirely possible that nutrient absorption and/or modulation of the ANS/immune system by the gut flora is disrupted. This explains the sudden onset.

Unfortunately, as I'm sure you've discovered, there are a number of products out there and results are pretty sketchy. I believe that the old fashioned, fermented foods are greatly superior to the supplements, as they have nourished and helped others for millennia. Out of curiosity, then, are you taking miso routinely?

This actually makes a TON of sense, as the H3 receptors can inhibit release of serotonin, dopamine, GABA, acetylcholine, and norepinephrine. They are present in the central and peripheral nervous system, heart, lungs, GI tract, and endothelial cells that line blood and lymph vessels. All areas that are commonly affected in dysautonomia.

I'll have to dig deeper into any compounds that might act on these receptors.

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Would you say the miso and soy sauce diet would or could possibly help with your migraines from what you have tried so far? I guess it's salt properties are helpful for low BP too.

How often are you eating it a day. You say you are not bothering with even the supplement version of kojic acid?

Very interesting though.

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I tried yogurt, but did not have good effects (so probably not that flora.) I started Miso a couple days ago, and will slowly be working up to a cup of miso soup (1 heaping tablespoon of miso paste in a mug of hot water) with every meal. It is a bit of an acquired taste: I've had some that tasted like a dirty dish-rag! This latest is pretty tasty, more like broth. I don't do supplement probiotics since I believe that the gut microbiome is more complex than a pill can produce. So far, so good on the headaches. I'll keep you posted as to my progress.

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