Need help quick

sweetkamie20

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I regret not asking for insight sooner because I have a doctor's appointment in about 15 hours.

I am looking for recommendations for medications that might be suitable for someone with fibro and a seizure disorder and their side effect of anxiety. My symptoms are light and sound sensitivity, quick overstimulation in public settings leading to exhaustion, and anxiousness I think because I anticipate the exhaustion coming. My electrical charge remains high gear all of the time. While my fibro points are extremely sensitive, touch generally calms this electrical charge feeling. I also use a weighted blanket now and it resolves it, too.

My doctor initially said only cymbalta (antidepressant) works but I am not keen on antidepressants. Anyone recommend an anti-anxiety medication that calms the electrical charge feelings, calms sensitivity to sound and light? Or a fibro-effective antidepressant that calms over-stimukation?
 

sunkacola

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Hi sweetkamie,
We can't advise you on medications, because what works for one person is not necessarily suitable for another.

Your doctor is really the best person to determine what you should be taking, as they will know your situation and what medications you are already taking and so on. Actually, even if we did recommend something to you, you could tell that to your doctor and it wouldn't affect their decision about what to give you in any case, as they know a great deal more than any of us do.
Wishing you the best of luck.
 

JayCS

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My doctor initially said only cymbalta (antidepressant) works but I am not keen on antidepressants. Anyone recommend an anti-anxiety medication that calms the electrical charge feelings, calms sensitivity to sound and light? Or a fibro-effective antidepressant that calms over-stimulation?
Hi there - Apart from our reactions to meds greatly varying, these are too "special" symptoms to know in advance what will work at all, including for docs, you'll just have to try.
In case you didn't see it I talked about a recent fibro med review here. I myself don't recommend any meds at all, I just transport things on them I read or my negative experiences.
Your doc is right that duloxetine ('Cymbalta') may well be the most suitable. For fibro you probably won't be taking it in an antidepressant dose, especially for starters, so your reservations about it aren't necessary. Amitriptyline is the other main one, altho it doesn't usually work on the type of depression that comes with fibro. But it helps some. And the other two I mention in the thread linked above, pregabalin and milnacipran, aren't anti-depressant, but it's still possible they help a bit or a lot, but also that they may harm a lot.
I get my seizures under control with the amino acid GABA, not with meds, and that helps me quite a bit with relaxation, pain, sleep, anxiety, sensitivity etc., so actually all you're looking for. It's powerful, quick and side effects are well controllable. But it's not a med, and docs don't know it, you need to research and try it yourself. So it doesn't seem where you're at at the moment.
 

JayCS

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Thanks so much for taking time to reply. I really appreciate your perspective
You're welcome. Forgot to add that pregabalin ('Lyrica') like the supp GABA is anti-convulsive, i.e. originally used for seizures and can also relax.
 

sweetkamie20

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Thank you so much for taking this time to answer. I am very interested in GABA now - which brand do you use?

To be honest, I have been trying lots of different supplements and they all terrify me initially because they tend to trigger a 2 or 3 day flare. It's rare to find one that is trustworthy for me.

Also always wonder if a lack of enzymes will make them ineffective sometimes. Apparently I lack enzymes. Our house looks like a pharmacy with supplements everywhere. Entertainment center has a ton of them just sitting there lol
 

JayCS

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Another thing I forgot to add is that I personally do think it right and important for people to educate themselves on the names of meds and roughly what they do before talking to docs, because docs need to know what we know about them and it helps them if we ask our questions and can discuss with them. They are just as "overwhelmed" by fibro as we are. we're all in this together. Several of my meds increased my focal seizures, as did electrotherapy, altho the docs knew that I have seizures. I trusted them, questioned it, they were wrong, I was right. If any docs'd still now try to tell me things and not listen, I'd smack those stories about their faces. But they don't try to any more as they know I know more than them about me as well as about fibro. And that way they learn and can support my quest as best they can.
I am very interested in GABA now - which brand do you use?
I started naively with a 750mg tablet version with additives. Luckily I needed that right from the start, but some people need much less. For most, it's best to get capsules (if possible with few additives) and open them, and start using 125mg sublingually for a few weeks to get a feeling for it and increase from there until the symptoms start getting worse again. Trudy Scott's anti-anxiety blog and her amino acid questionnaire has great informations incl. US products. Personally I get big tubs (300g) of powder from SinaPlaSan (German company, but English version website too) and fill them into HPMC capsules myself. That way it doesn't affect the acidity in my esophagus and stomach and it's also as pure as possible. I need 5x0.6 = 3g per day at the moment, so much more than most people. I like you use 30 different supps every day for my various conditions, which all do help a bit, but the effect of GABA on me is more than all the rest put together and I can feel the effect inside of hours so I can judge when I have to take them and how much pretty quickly. Also my cheapest supp, by the way...!
 

sweetkamie20

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I have read a ton about the medications but hate trying psychotropics thanks to having the "Noone ever has those" side effects to psychotropics lol. Keppra rage wasn't even the worst if you can imagine that. Keppra had me bursting into tears with no explanation and raging angry the next-just one of those "never happens" side effects. (For anyone reading: askapatient provides a solely user-based review of all medications-you can see what real users claim the side effects, good and bad, are.)

I can't find 1 medication that doesn't scare me to try. If I could identify 1 that targets everything GABA is working on for you I would try it. However, all the better that there is a supplement that could tackle this!

I also manually fill pills :). Takes a while but I just binge watch something and go to town :). I can't imagine taking as many supplements as you do. I feel like it would drive me into a flare taking just 3 at once. What a blessing to be able to handle so much!
 

SuSu

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I won't advise you on medication, because as was stated that's for your doctor to do, but I can tell you my experience coming off of cymbalta was a nightmare. If you ever decide to quit taking it do so very slowly and under a doctor's supervision. It not only gave me horrendous brain zaps, but made me almost suicidally depressed. I'm sure it's not that bad for everyone but it is known for being difficult to quit.
 

sweetkamie20

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I saw others say the similar things Susu but yours sounds even worse than the rest! I am so sorry this happened to you. Sharing your experience could be sparing a lot of people the same horrible time you had. Not much consolation, I realize, but I hope you find some comfort in that. You just permanently erased cymbalta off my desperate measures list. Oh, and one less dollar that goes towards these greedy, horrible drug companies is worth celebrating, too. They have deliberately said, "I don't want you to know how much you might suffer. Take this."
 

JayCS

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I can't find 1 medication that doesn't scare me to try. If I could identify 1 that targets everything GABA is working on for you I would try it. However, all the better that there is a supplement that could tackle this!
I also manually fill pills :). Takes a while but I just binge watch something and go to town :). I can't imagine taking as many supplements as you do. I feel like it would drive me into a flare taking just 3 at once. What a blessing to be able to handle so much!
Does sound that like me your body doesn't want any meds, so I'm now surprised you even asked... and would recommend you avoiding them plague, like I do.
I actually bought a good filling machine, 100 pills, but was very disappointed. I need less than 10 seconds per pill, that'd mean the filling machine would need to be quicker than 16 minutes to be worth it, and it took much longer, didn't work well, some of my capsules need to be only half full, and it was just no fun. While filling manually, I prefer binge listening (like phoning with some with a headset on) to binge watching where I would keep looking up - but apart from that similar.
I did increase the amount of supps very slowly and there were times it felt as if I were not tolerating them either. First protocol I followed also had a certain progression, didn't have side effects, but also no effect. As I desperately needed something for sleep I then targetted that, and the first ones didn't do anything, the 2nd group harmed, even adjusting quite a bit, and then having nothing left I started this strange GABA, and found I tolerated it well, it worked well, and could check out how to influence the side effects. And passiflora was something I'd tried without effect. As with all of them I revisited it, and in this case increased the dose, which is now about double the maximum dose recommended, which is now working OK for me together with the GABA and various "techniques" like cold showering and if necessary Yoga Nidra.
There's about 60 different supps/herbs I've tried, and I tolerate about 80%. I'd been up to 30 for fibro alone, and then took some out again that weren't working enough, but had to add a whole lot to get my iipids and more to get blood pressure down, plus a jaw inflammation. And another whole lot for my MCAS. I now usually know what to look out for, and when to take them (e.g. with meals) to make sure I tolerate them and they still work.
I feel like it would drive me into a flare taking just 3 at once. What a blessing to be able to handle so much!
Well "feeling like it would" was never a sufficient reason for me. To progress, I diligently tested adding each supp several times until I was sure, so yes it is a blessing, but also hard analytical work and self-discipline on my blog with detailed notes on all treatments, triggers and symptoms. That was when it was only fibro. Now with lipids, jaw inflammation & MCAS I admit I did rapidly increase, because it was an emergency and there I spose I was pretty much blessed. But I did suddenly have one severe reaction (not tolerating any showers), which I first thought was the jabs/MCAS, but reading something about them I suspected two of the supps (vit.C & NAC) and stopping them immediately helped. But still not satisfied I added vit. C again, starting lower, cos that's crucial for MCAS, and it was OK. Haven't tried NAC again, although I'd just bought a few months supply. Something for when I run out of new ideas again.
Many of the fibro ones I still take support the GABA/serotonin connection. But it's also interesting that many are pleiotrope, which means they serve several purposes at the same time - my fibro, my lipids, my inflammation and my MCAS. Made a big grid of them where I collect all info which I've found on their main effects, side effects, dosage info and even price. Every now and then I'm surprised to find I'm still doing something "wrong", like taking magnolia/honokiol in the mornings altho it's good for sleep. So it's always good to regularly check and keep on my toes.
 

JayCS

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... the focus is always on treatment of the symptoms, which is quite understandable. However, treating the causes of fibromyalgia and other chronic illnesses should be the goal, so the body can heal itself.
Yeah, wow, of course, some day we will be closer to the causes. Sorry to say it's not that easy. I've often thought I was "closer to the cause", and looking at connections gave me clues as to what treatment to prioritize. I've found many many triggers, if that's more what you mean, and have learnt to prevent and alleviate them, which has decreased many pains and increased my quality of life. But of my fibro and my MCAS the real "cause" is completely in the dark. What I'm pretty sure about is, that mine are different to those of others and very very complex. So whilst no one could do more than I do, spending a full-time job on researching and testing myself, I've no way managed to get into that ideal position that my body can heal itself.
He was very chronic with fatigue
Funny way of putting it, is it a typo or did you mean it like that? :cool:
What we found (we were both Physios working together) was that his blood vessel tone was very low which meant his rate of blood flow was slower than it should be. This meant less oxygen
These to me are not triggers, but connections, not causes, much less a single root cause. I've found out many connections, the main ones being connected to the fact that GABA works for me. But it's more like having trialled GABA and seeing that it helps several symptom areas, which sure is close to what you are hoping for.
Then we came across some work done by Frederick Erdman and started to study this and work out how it worked.
I've found information hints on handspringbodywork, but none of the links are helpful (not working or...:). The study of his done in 2003 (no abstract, article behind paywall) refers to "hot and cold therapy". These are things I've tried everything of and actually have done whole body cryotherapy for over a year and still use cold showers to get to sleep and reduce pain (and likely inflammatory substances like cytokines). Most people with fibro try heat, most are wary of trying cold, as cold generally seems a problem ( for me too, if it's too long, but heat too).
discovered frequency healing, including Hulda Clarke's work... more advanced frequency generators that can scan the body for any irregular pathogens or frequencies
I've also tried several spooky methods, like bioresonance claims similar, despite them not having any medical evidence. The practitioner was good, scanned, treated such irregularities and then thankfully after about 8-10 treatments said: OK, that was it, it doesn't seem to be anything I can treat with this method. Doubt I'll be able to find people doing that here. But looking generally at what Hulda Clarke claims this can do it annoys me when people make high health claims, specifically use "medical" terms without the least proof and make gadgets or protocols that cost quite a bit of money. I much prefer someone like Erdman suggesting things which are more common sense.
Treating the cause is always the way to long-term changes.
Remember, healing in chronic conditions is always slow, but all good things take time.
Support the body, remove obstacles getting in its way and it will do what it is designed to do, heal itself.
Sorry to say: Commonplaces that are very exasperating to us and especially me after all I've tried.
As far as supplements are concerned these are useful to support the body while it repairs
Yep, and as nothing else has worked and everyone is stumped, I'm down to support, nil repair....
one that my Dad took for the brain fog and that was Glutathione .... L-Glutamine, not Glutathione...
Oh yes, glutamine was one of my first, in conjunction with GABA, to balance it/serotonin out as it increases dopamine. Tried all kind of dosages - increasing too much suddenly caused the most severe stabby thigh cramps that made me cry out in the middle of the day. But didn't take long to figure out what it was. Now I'm down to 0.6 and 0.3g per day. It's one of the amino acids (the other is theanine) which allows me to increase the GABA/serotonin to do its work.
Highly sophisticated stuff to get this all into balance and tolerance. And yet I'm still blundering around in the dark, not "bedridden", but pretty much housebound at the moment, just with a pretty high quality of life due to my optimism, inner energy and keeping contact to the "outside world" via short stints and typing....
Healing? A few days or even an hour walking in my shoes, doing what I do every day, every hour, every minute, would cure that optimism! 🧐
 

sunkacola

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treating the causes of fibromyalgia and other chronic illnesses should be the goal, so the body can heal itself.
Of course. IF, that is, one knows the causes! And this is unknown with fibro. I do, however, always advocate for people doing everything they possibly can to have better overall health because that will be very helpful in managing fibro (or anything else, no doubt), and can lead for some people to a reduction in pain severity and frequency.

Treating the cause is always the way to long-term changes. Remember, healing in chronic conditions is always slow, but all good things take time. As far as supplements are concerned these are useful to support the body while it repairs......support the body, remove obstacles getting in its way and it will do what it is designed to do, heal itself.
Well, if supporting the body and "removing obstacles" were all it took I think we would all be much healthier. Sadly, as JayCS points out above, this is a kind of cliché that doesn't really hold water because no matter how much we support our bodies it doesn't mean the body can heal itself of something like fibro, and I agree with JayCS that this is a bit of an exasperating thing to hear. Even though I always direct people toward natural ways of being more healthy in order to manage fibro, I never suggest that the body will heal itself of fibro. It doesn't work the way that a cut or bruise will heal.

As far as supplements are concerned these are useful to support the body while it repairs
Again, if what you have is a broken bone or a cut, this is definitely true. But fibromyalgia is not something that needs "repair". It is systemic, causes unknown (although we can identify triggers), and does not manifest or respond to treatment the same from one person to another.

As JayCS says, if one is that optimistic about healing or repair they might want to be in his shoes or in those of any of us here and then see whether or not they believe that it is that simple.
 

sweetkamie20

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It is always interesting reading to these threads and how the focus is always on treatment of the symptoms, which is quite understandable. However, treating the causes of fibromyalgia and other chronic illnesses should be the goal, so the body can heal itself.
Couldn't agree more but I think it's helpful to remember 2 things. One, the body is a fascinating, intricate, never adequately understood entity. And it is affected by realities outside of our control. For instance, some people are super sensitive to electromagnetic frequencies and would do much better living in one of the few communities designed as safe harbors for them. In a nutshell, we can seek to get obstacles out of the way for the body but must be willing to cede surrender on some things and move on to managing symptoms.

I admire your family's investment and prowess in discovering causes. I hope your family's successes are viewed as the graces of God. Not all of us are as amply equipped to do what you all have done and it doesn't mean we don't care or arent as committed.

The second thing worth remembering is that there is a role for medications for some people sometimes. For instance, I have a seizure disorder and while I would love to rely on anything other than medication my body does not consistently respond to supplements (perhaps enzyme deficiencies, leaky gut, etc- till trying to figure it all out). To date my choice has been to take a medication that has minimal side effects that consistently prevents a seizure. The alternative is to quit driving and keep having seizures and potentially brain damage.

I know it may sound like I haven't tried hard enough but we have spent thousands and thousands of dollars, innumerable hours of research (including Hilda Clark), etc. to try and solve the riddle of my body. I don't respond well to just about any supplement, tolerating more than 2 at a time has not often happened and when it did it did not work like that again, what I can tolerate one day can backstab me the next. Not responding well doesn't mean I get a little nauseous; it means I go into a full blown flare for 2-3 days. I feel like I am on a tightwire-my first goal is not to fall into a flare, my second is to balance on the straight and narrow.

In the case of others' health, I think it's only right for me to assume that I don't know ALL of the reasons someone else may prefer one avenue over another. I know money has played a role in my decisions. Also, flares can trigger depression, severe depression, and if a medication can provide temporary relief while searching for a healthier alternative I think we should encourage that. God knows any relief for symptoms is received as a welcome gift from Him.

I can only speak for myself but in my case, I hate psychotropic medication. When I say I am interested in learning about people's experiences with psychotropic medication, it's safe to assume it's for a good reason maybe just not a reason you know about yet.
 
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sweetkamie20

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Yeah, I hate meds but my body responds to supplements about as well as meds lol. Oddly enough, the wrong meds drastically impair my mental health, but the supplements send me into flares. It's easy to forget which is worse lol I hate meds, but I am open to them as a few have helped mitigate things.

I think I misspoke when I wrote that I think taking 3 at once would send me into a flare. I have taken 3 or more at once and it has driven me into flares consistently. Bbbuuuuttttt I am optimistic that I am getting to the point of identifying 3 that are reliably safe and won't trigger a flare.

Has anyone else experienced this: you are taking a supplement that works for you, then introduce a second supplement and go into a flare, and then after you stopped the second one your body doesnt respond as well to one that originally was good?

When I go into a flare, I back off of supplements and reintroduce one by one, separately. Otherwise my body seems to stay in a flare. It's almost like a physiological PTSD happens-normally good supplement results in an allergic type overreaction. Anyone else?
 
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