toddm1960

So good to hear from you Erika, and even nicer to hear you're doing better. Wishing you many more good days.....

I agree with you 100% avidita, no one should advise the forum the KEY to improving X or Y. Different underlying causes of POTS will have one treatment always, ALWAYS work for half of us and never, NEVER work for the other half.

Did Mayo list the studies to support this? Were they talking about teenage cases or adult cases or all cases? The only studies I've seen have been on teenagers and 90% is way higher than any recovery number I've seen. If they have studies on cure rates they should have some life span numbers for those of us that don't get better, haven't seen those numbers either.

I had the same reaction newbie, very jittery with a racing heart.....but felt more washed out than normal. Very strange feeling, I had it woth both Ritalin and Adderall. I've had the same reaction to most POTS drugs either a stimulant like these or a bata blocker, everything seems to worsen my exhaustion. Wonder if this is a mito reaction?.......oh well as always, more questions than answers. Good luck with the lower dose I hope it helps you.

Sarah4 in my case I have esophageal spasms, laying flat or leaning forward seems to set this off. Have you had an esophageal monomitry?

I have these problems, I'm much better since I raised the head of my bed 4". Even then I can't fall asleep on my back, just on my sides. I even get the throat closing feelings when I bend forward. Not sure what causes it all, but I hope you can find things to help you feel better.

So sorry you're having somuch trouble with this houswoea, issie brings up a good point about spasms. I also have terrible chest pain that was found out to be esophageal spasms, I would swear I hve a knife in my chest, and so many ER vists. This may not be what is behind yours but it sure it worth looking into. I hope you can find something tha helps.

Michelle have you thought of putting this on youtube, it's such great information I wonder if more people would be exposed.

Good for you thankful, that's great to hear. Wouldn't we all like to have even a part of our old lives back. I wish you the best and hope you continue to feel better.

I stopped using the word fatigued, if a doctor uses it I tell them this is not fatigue. I describe it this way, if I were in a burning house, I would probibly get out but my butt would be burned. At it's worse it's so overwhelming nothing short of a fire can get me up, it's not always this bad but it's never gone.

Plenty of us are orthostatic hypertensive, the only difference with me is my pulse pressure narrows. Try taking your BP and pulse 3, 6 and 10 minutes after standing, you may find it continues to climb.....that's what mine does. Just because 120/70 looks normal you need to know where you are supine and what it does standing after 10 minutes. You could feel bad because of low blood volume, you said it was bad after you eat, blood pools in your stomach at this time. I hope you find something to help and that you start feeling better soon.

Nowwhat, Mack'sMom is correct I didn't mean to make it sound like I don't have cognitive issues.....my memory is called "POST-IT" I leave notes all over also. It makes me feel so much better someone else has those "lost" moments driving in town, or forget how to get somewhere you've been to thousands of times, it is very scary. So I do have have all of the same problems....just a clean MRI. Let us know if you find out anything more.

Welcome to our dysfunctional family Shan, everyone of us can relate to each of those symptoms you listed. Now if you or your doctors feel other avenues need to be looked into by all means push forward with that. I do hope you find some things to make you feel better, and you get a reduction in your symptoms.

I also have a trouble with deep breathing and the vasalva maneuver, at times I feel like I can't get a deep breath in. I think the vasalva maneuver is used during TTTing because in normal people ( sorry we're not normal) it should calm down an over sympathic nervous system response. Eitehr way deep breathing or vasalva maneuver just wipes me out, I'm exhausted and need to lay down after.

I'm floored (no pun) an insurance company finding a way to pull needed coverage. I'm shocked they didn't tell you dysautonomia was a pre-existing condition so your TTT isn't covered! I'm sorry but insurance companies add no value to medical care, and their only two ways to maximize profits, increase premiums or cut care......and we're getting both. I can't get coverage for drugs and cofactors I need also so I have no use for insurance companies or politicians that protect them. Sorry that's my venting for the day.

My MRI was normal also, it was one of the earlier tests I had, well before getting diagnosed. I hope you find some answers, and start to feel and function better.

I'm going to sound like a broken record, but your PCP is worth their weight in gold, these doctors are hard to find. Build your team around this person, and don't settle for any doctor that treats you that way again. I do agree with PotsMom that since these doctors can't "cure" POTS they tire of not having answers and it shows in the way they respond to us. Good luck, I hope you feel better and let your PCP know what a great job they are doing for you.

I had the muscle biopsy after many other tests, bring it up to your doctor as there can be many causes for your muscle soreness. My dysautonomia and muscle problems happen to have a mitochondrial root, as you read the forum you'll see there can be many primary problems causing both. That's why it's key to have a good team (or at least one) of doctors that understand dysautonomia and can work with you to find all of th fun things we have going on.

Sorry you're having such a hard time with this Julie. I get the same sharp, cramping pains in my muscles when using or streching them. Also a day or two after using them my muscles feel like they've been hit with a baseball bat. The pain I have in my back starts after standing for too long, 20 or 30 minutes. Mine is connected with mitochondrial issues, I hope you can find some answers and relief for your pain.

I do have an over sympathetic response to standing, and hyperadrenergic POTS. I also get a narrowing palse pressure when standing which points to hypovalemia, which needs sodium loading. I'm half way in and half way out all at the same time with this one.

Hey rama nice to see you back, hope you've been well. Are you now a married man? I'm more worried about the mito affects rather than the POTS affects, the feeling I get after exercise is more like being hit by a bat and bruised more than an over used muscle sorness. Like I said I still try, but feel like I'm going backwards.

Mack's Mom any guess as to why the H1 & H2 help with this? Do you think it would only help if you were having mast cell issues? It's worth a try I already take Allegra-D I'd love to reduce this even a small amount if I could. Thanks for the info.

Megan you are correct it was Dr. Kendall on the mitoaction webinar, I had been reading information from Dr Sims and didn't correctly give her credit. This is the swab testing I talked about also, and the problem today is if you don't have a known variant this can only find dysfunction is 2 of the 5 OXPHOS complexs. When you say the ONLY 100% sure diagnosis of mitochondrial disease is finding a pathogenic gene mutation, that's great if you have known variant. There are thousands, maybe tens of thousands of unknown variants today. My goal was to find out if I had mitochondrial dysfuction, either a known variant or not and the only way to find mitochondrial breakdown is with a fresh tissue biopsy (my mitochondrial genenome testing was negiative). You are correct in saying it could be mtDNA or nuclear DNA, to me it didn't matter, I wanted confirmation the mitochondria were not functioning correctly. Had I only had the blood or genetic testing I would have been told there's no mitochondrial problems. As far as insurance covering mito vitamins and cofactors could you please write to Blue Cross and Blue Shield of New York, I've appealed twice and coverage has been turned down 3 times. Each time I've noted the orphan drug status and medical food version for C-Q10. Though like you I havn't seen much if any improvement in symptoms or overall feeling. Megan if you don't mind could you share what was found with your fresh tissue biopsy, and it sounds like you also had your CSF checked ( I did also ) what did they find and where did you have yours done? Please don't take of of this response as mean or agrumentative, it's not meant that way at all. I do enjoy the back and forth of ideas and information, and don't like threads that become personal attacts.

I know just what you mean, all of my joints scream at me in the morning, after sitting, it's crazy. Mine has gone on for 5 years now, my line to the doctrs is I feel like I'm 80 years old. Strange points of pain in the last three knuckles of both feet and hands, very pin point sharp pain in those 6 joints.

I love the chips idea, I'll remember that one. What I do is have a can of soup everyday for lunch, same idea......sodium. Also Gatorade is your friend. I hope these little thing help you feel better, and we're all right there with you.