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kitt

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  1. Hi All,

    This is a very comprehensive online book that was written by an extraordinary and compassionate NIH researcher/M.D. named Dr. David Goldstein. He is a rare researcher. He's not only dedicated his career to dysautonomia research but also sees select patients involved in NIH studies. He doesn't sit alone in an ivory tower...He has experience with patients.

    I found this book to be incredibly comprehensive. More comprehensive than any dysautonomia publication I'd read before. He has a newer version with hundreds of color images but it was sent to me via Dropbox and I don't know how to share it that version. This one is outstanding though.

    It's helpful to print it out and study at leisure.

    http://www.ndrf.org/NDRF%20Patient%20Handbook/SecA_pp17-58.PDF

    Enjoy,

    K

  2. Goschi, my response to Midodrine is much like yours or at least like yours in many ways. Are you experiencing any side effects that are constant?

    I'm taking 2.5 of Midodrine between 5 and 7 a.m. and it does nothing for my BP. I go back to bed. Between 9 and 10 I still can't get a BP reading. I take another 2.5 mg and a few hours later I'm at 60/40. Ironically that dose tends to last all day. I've read all about half life etc...But this is how it works on me.

    I've not been on it long but I'm noted by my doctor for side affects. My internist once said 'The only thing you get from meds is side affects' True dat.

    But am 'glued' to Midodrine at this point because a dozen other meds have NOT helped....Including beta blockers, (BP too low), Labetalol, Mestonin, (contradicted in hyperadrenergic patients), Methyldopa, Clonodine....Have tried them all. Midodrine is the only thing that seems to boost BP w/out a lot of side affects.

    The side affects I do have are intermittent scalp itching, loss of appetite, and a sense of sadness that has come on in the evening since starting Midodrine.

    Was seen at Mayo in MN earlier this year by a dysautonomia specialist and visited her again since that first visit. I asked her 'Why am I not depressed?' Is it because my catacholamine dopamine level is high? (it's very high along with my NE...(Neuropinephrine) which is well over 1500 standing which makes me hyperadrenergic.) She said 'Probably'...So my very high dopamine level has also kept me from being depressed....Until Midodrine.

    With Midodrine I've noticed an evening 'sadness'...So unlike me. One of the side effects listed for Midodrine is anxiety. I'm always the calmest person in the room. Yet, I read that someone who is depressed is anxious and someone who is anxious is depressed. So I hope this particular side affect of Midodrine is fleeting. I've not been on it long (almost 2 weeks), so I hope this particular side affect goes away soon.

    Hoping others taking Midodrine will chime in. Though it does nothing for my hyperadrenergic state, tachycardia or bradycardia...I'm grateful that it helps with low BP.

    Wishing everyone the best!

    K

  3. I have this pain also, and it's difficult. Mine is mostly in the mornings when my BP is lowest, but all day no matter how much I'm sweating (hyperadrenergic) I wrap something around my shoulders due to this pain. My husband says 'Why are we keeping the AC at 69 degrees if you're cold?' I'm not 'cold'...My shoulders hurt and are sensitive...It's almost comical in that there is such a dichotomy in my symptoms, signs and comfort.

    Good luck with this. Dysautonomia is a spectrum disease as are most autoimmune diseases. Coat hanger syndrome is the same way. You may be suffering in a way with this that most can't understand.

    I see a pain management specialist for my muscle relaxants, (even though I don't take opiods) and I explained I also had 'coat hangar syndrome' along with many others....He asked if it was from picking up too many coat hangers? I didn't even try and explain it. He's actually a very compassionate doctor and that was his attempt at humor as he'd never heard of it before and I didn't have the energy to try and explain.

    Good luck with this. I know it hurts.

    Best,

    K

  4. My BP is so low when I wake in the morning my BP machine can't get a reading. One 2.5 Midodrine does nothing despite laying flat after taking it. Taking a 2nd 2.5 tab will raise my BP to 60/40. After a few hours my BP will become 'normal' enough and I try not to take any for the rest of the day. That's a good day.

    My BP is labile and goes from very very low to very very high. Am both hypo and also hyper (Both systolic and diastolic) ...So my sympathetic nervous system is misfiring and causing a lot of 'out of the box' reactions with both heart rate and BP.

    I've tried every med under the sun and this is the first one I can tolerate. Others caused my BP to go too low and stay too low.

    Good luck with it. It's new for me so I'll let you know about the weight gain issue. As for now my appetite is decreased on it.

  5. I was first dx with pots when I was 55 but knew I'd had it for a few years.

    If it had only stayed the way it was then I'd be glad but it's deteriorated considerably.

    A recent Mayo visit showed I have not only pots but NCS, (another form of dysautonomia). Because of this my heart rate varies from 135 to 50. Both tachycardia and bradycardia.

    A 24 hour BP and heart rate monitor at Mayo showed that my BP is also labile. It can be extremely hyper and hypo. Diastolic as high as 180 and as low as 70.

    My mayo neurologist is a pots expert and researcher, and she has not been able to find a medication yet that doesn't dramatically cause BP issues.

    I was also dx at Mayo with hyperhidrosis and for added fun I'm hyperadrenergic with an NE over 1500 SITTING! (It's usually measured standing but Mayo has changed their protocol.)

    So 'usually' (as was mentioned above) women 50 and older do not get pots. But clearly that's not true. Not only do we get it but it can be very extreme.

    Best,

    K

  6. Janet, Thanks for this information about how often you take it! I really didn't get good instructions during the video visit with my doctor. Walgreens filled mine too, and without a problem. I use Walgreens for all my scripts and have found that if I ask they'll stock anything ahead of time that I'm going to continue to use.

    I didn't know that I was supposed to take 2 ampules at a time. That's good to know.

    Are you feeling better on it, and in what way?

    The doctor Theo Theopolis (wrong spelling) is all over the net with data on mast cells. He has videos too.

    Dr Klimas was going to set me up with a phone consult with him for mast cell info but I denied it. That was two years ago, but now I would have taken her up on that. He really is a genius on mast cell research.

    Thanks again,

    K

  7. Hi Melanie,

    I'm sorry you're experiencing this but am so glad you saw an expert at Mayo. I think you're in good hands on that front.

    Hang in there, we don't know what the future holds and the next 'new thing' may be just right for you. One lady on this forum was very ill with pots and is now getting ready to run a marathon!

    Keep hoping and coping...Sounds like you're a tough gal, and I'm glad you're able to see the silver lining in each day.

    I'll be sending good thoughts your way.

    Best,

    K

  8. My pots neurologist at Mayo in MN recently prescribed liquid Cromolyn, (Brand name is Gastrocrom) for MCAS, common in in people with severe hyperadrenergic pots, (NE between 1000 and 2000).

    Wondering if anyone has tried it and what was your experience?

    It's been a good thing for me thus far and very easy to take...Squirt it into a small amount of water and it lessens MCAS.

    Thanks,

    K

  9. Before trying prescription meds have you had your catecholamines checked? Meaning a blood test done while standing to check your norepinephrine levels?

    Norepinephrine and sleep are intrinsically tied together. A sleep study may be of no value if your NE levels are very high (which would indicate you have hyperadrenergic pots). Hyperadrenergic pots includes having sleep disturbances accompanied by temp changes...Including sweating and waking suddenly from a deep sleep.

    Sigh...Am sorry you're experiencing this for whatever reason.

    A simple catecholamine blood test provides much more definitive information than a forum can provide.

    I had wicked episodes of not sleeping, night sweats, sudden awakening etc..I knew I had hyperadrenergic pots and even though I knew and my cardiologist knew I was extremely hyperadrenergic it wasn't until I went to Mayo in MN earlier this year that I got help for this. The sleep specialist I saw there knew immediately that I did not have a sleep issue that could be helped with a sleep study but rather a biorhythm disturbance that he gave me very precise instructions for. It worked.

    I learned from the pots specialist and pots researcher there (neurologist) that sleep and hyperadrenergic potss are tied in such a way that it becomes a 'chicken and egg' situation. I had to resolve the sleep issue first before proceeding with more pots medications. Sleep aids of any kind were absolutely NOT recommended.

    Am wishing you a speedy resolution with this! It's a difficult situation. Sleep is so important but it's critical to establish the cause of your sleep disturbance before embarking on meds or a sleep study.

    Best,

    K

  10. Foggy,

    I am very, very grateful to Mayo Clinic in MN and also the satellite Mayo in Florida. I had several surgeries at Mayo in MN and have been there many times and have also been a patient at the Florida Mayo clinic since it opened. One of the surgeries I had at Mayo MN could not and would not have been done successfully anywhere else. I can't begin to express my gratitude.

    Am also grateful for the care I received from Dr. Sandroni and the autonomic clinic at Mayo in MN and while I disagree with their view that hypervigilance is a part of pots, I respect the doctors there enormously. Mayo in MN is responsible for much of what is known about dysautonomia in the world today. Dr. Low who no longer sees patients invented/developed the thermoregulatory sweat test and that test is of tremendous value for patients with all sorts of autonomic problems...Not just pots but Parkinson's patients and many others. That test is only performed at the Mayo in MN and nowhere else in the world.

    Dr. Low had a son with pots (as I understand it) and began researching pots in the 1970's, long before anyone else was.

    Most of us with pots or other forms of dysautonomia are benefitting from the research done at Mayo.

    Mayo is very different in that they are world renowned as a diagnostic clinic. They generally do not follow the same patients for extended periods and in most instances see new patients every single day. They specialize in diagnosing difficult illnesses. While that would never be boring, it also does not allow them to get to know the people they're seeing. That may be a slight drawback for the patient but very small in the big picture.

    People come from all over the world to see doctors at Mayo in MN. You will see interpreters speaking every language imaginable there.

    When you go to Mayo in MN not only does your doctor review your records but probably no less than a dozen doctors you'll never meet are reviewing them 'behind the scenes'. All doctors you see coordinate on your diagnosis and care and it's an extraordinary process.

    I feel blessed beyond words to have had the good fortune to receive their care and often have received tremendous kindness from their doctors and surgeons.

    Best,

    K

  11. I absolutely love the Mayo Clinic Proceedings article and all of the detail put into it. Thank you for sharing! I can't wait until I feel up to printing it out and reading it in more depth.

    Off topic sort of: The only portion I dislike so far is the part where a suggested cause of continued symptoms despite control of tachycardia and blood pressure is "somatic hypervigiliance " and "learned behavior".

    I went through Mayo's autonomic clinic and fully recommend it to anyone who asks me about it, so please do not take my thoughts as thinking Mayo is a waste of time or unhelpful. "Learned behavior" is what they told me was wrong at Mayo Clinic for symptoms they couldn't explain which I found disappointing. I have "learned" to respond to certain things with a fever and swollen lymph nodes....? I appreciate when doctors tell me they don't know rather than saying something like that.

    That aspect of their theory irks me because I think many POTS patients have underlying causes that are labeled as "somatic hypervigiliance"... Yes, in some cases I am sure they are right. I just don't think their theory is the case as a general rule when it comes to non-orthostatic symptoms.

    Jackie, Oh about the hypervigilance! Here's by experience at Mayo discussing this topic.

    This Mayo article was posted last year on Dinet by Izzy and it is the best article I've found by far on pots. There is a long thread about it on Dinet. I studied the article carefully many times before my visit to Mayo MN.

    Jackie, When I was seen at Mayo MN earlier this year I asked Dr. Sandroni, (a major dysautonomia researcher there) about the use of the word 'hypervigilance' in that paper. I didn't ask about 'learned behavior' and she didn't mention it.

    I too was IRKED (your words) that hypervigilance was mentioned and Dr Sandroni said, "I've never met a pots patient who wasn't a type A personality' That was her 'take' on the use of the word.

    Yes, I 'was' a type A personality when I was well, but I have dealt with so many health issues & too many surgeries to list over the years and the combination of having hyperadrenergic pots and neurocardiogenic syncope along with autoimmune issues and CFS is very debilitating. As a result of all this I'm no longer a 'Type A'. I don't have the energy to be a 'Type A' and I too resent the use of the word hypervigilance. I absolutely know that I don't 'scan myself' for symptoms. In fact my style is to try and ignore them as much as possible!

    Here's an interesting discussion about hypervigilance! http://physicaltherapy.rehabedge.com/tm.aspx?m=62409

    Jackie, am glad I'm not the only one who was bothered by the use of this word enough to ask a Mayo dysautonomia specialist about it.

    Best,

    K

  12. Is Zoloft in the same class as Wellbutrin, (I haven't researched it.)

    Zoloft is an SSRI. Wellbutrin is sometimes said to be both a dopamine reuptake inhibitor (DRI) and a norepinephrine reuptake inhibitor (NR), but in reality its DRI properties are so weak that it is basically an NRI. It isalso a nicotinic acetylcholine antagonist, which is responsible for its efficacy as a smoking cessation aid.

    Wellbutrin is often given in combination with an SSRI to restore libido and reverse emotional blunting caused by the SSRI.

    The combination of Zoloft and Wellbutrin was sometimes nicknamed "WellLoft" by psychiatrists because of their synergy.

    That's interesting. I looked at the two separately and individually and I read what you had written. I also read that some people gained weight on Zoloft and some people lost weight. My recollection is that Zoloft decreased my appetite, so weight was not an issue. What I found interesting is something I read on a forum while researching Zoloft. One women wrote that her doctor told her that if she gained weight on it she should stop taking it, that it meant she was somehow allergic to it. Found that interesting because many people complained about gaining weight on it and many claimed they lost weight.

    The two together make sense. It seems there is an 'emotional blunting' on Zoloft alone and the Wellbutrin added helps that. I don't understand that yet, but I don't want 'emotional blunting'.

    I've had such a lousy response to most pots meds that I'm willing to try a SSRI and intend to ask about it. Thanks for sharing about 'WellLoft', an interesting combination.

    Btw, before you decide to see Dr. Blitshteyn you might want to start a thread asking if others have seen her. I know of one person on Dinet who did see her and wasn't happy with the experience. She shared that information with me privately but perhaps she'll see your post and share with you.

    Wishing you the best,

    K

  13. Bellgirl, did you have any side affects with Wellbutrin? Is Zoloft in the same class as Wellbutrin, (I haven't researched it.)

    Doctors who treat CFS used to use antidepressants as immune modulators. Don't think that's still a common approach, but I found I didn't tolerate most of them but did tolerate Zoloft. It's been over a decade since I took it but I did tolerate it. Just curious about side affects of Wellbutrin, if any.

    DeGenesis, I understand your catecholamines were done via urine but for purposes of dysautonomia they're done via blood rather than urine. You may want to have them checked again. It's a very easy test.

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