1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
Discuss the article on the Forums.

POTS, mast cells & Vanderbilt

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Questus, Jan 28, 2013.

  1. taniaaust1

    taniaaust1

    Messages:
    8,227
    Likes:
    5,197
    Sth Australia
    Thanks for all that info. Its very helpful to me. I wish a doctor would test my STANDING norephinephrine levels!! I only currently have abnormally high 24hr urine ones.

    I'll report your post to bring your question to the mods so they can advise. (I had the first issue happening at one point back when the site changed servers it then came good for me)

    I havent found a doctor yet to give me saline scripts.. thou did found a doctor who does a once per week IV clinic early mornings who would be willing to allow me to have saline IVs there.. unfortunately thou its the other side of the city and I cant drive. Im about to thou try yet another doctor and hopefully will have some help there.

    I hhope the Mestonin works for you. I havent heard of that drug before.

    Cardio rehab? Im not sure how one would do that with ME/CFS..best luck. It may be great for those who just have dysautonomia..but I doubt if cardio stuff would be good for ME people (it can also triger mast cell issues if someone has them).
     
    Questus likes this.
  2. Questus

    Questus Senior Member

    Messages:
    125
    Likes:
    87
    Tania,

    A pleasure to hear from you, and glad this article helped you.

    I printed it out long ago and took it to my cardiologist and he was appreciative of it.

    Am glad you have saline once a week. Have you considered contacting your insurance company and see if you have 'home health care' insurance? If you do, you can have a picc line put in and get it every day )or as many days as your insurance co allows) in the comfort of your home.

    My cardiologist recommended against being 'stuck' frequently doing to my small stature, small veins, etc...and felt a picc line was a better suggestion.

    Wishing you the best!
    Questus
     
  3. taniaaust1

    taniaaust1

    Messages:
    8,227
    Likes:
    5,197
    Sth Australia
    I cant get there as its other side of the city and I dont drive so havent got to trial it.

    I'll try contacting my insurance company but I dont have full insurance (only some extras eg chiro, dentist, physio iwth no hospital coverage).


    nods Ive heard they dont like to be sticking needles in regularly and hence do things like picc line, they do that even in those who dont have a small stature. I would like something like that IF IV saline works for me as just cant get anywhere to have it done all the time (I dont know till I get to try it if its even going to help or not yet).
     
  4. Shell

    Shell Senior Member

    Messages:
    477
    Likes:
    613
    England
    Questus - Thank you for posting this info.
    I am currently waiting (and waiting and...) for hyper PoTs tests. I believe, thanks to many symptoms that I have hyper POTS and possibly MCA. I get the flushing randomly, but mostly evening when particularly knackered.

    It's interesting to see that both norepinephrine and dopamine should be tested while standing.

    I have been questioning the "hyper POTs is very rare" statements for a while. If the work of Patrick Woods and others is right then most people with Fibromyalgia are really hyper Potsies.

    Do you know if stroke or heart events are higher in hyper pots? I'm asking as my BP goes sky high and then drops suddenly (probably puts me in the combo Pots box to be honest) as my tacky gets going.
    I think I had a TIA last week. Had severe migraine but no aura which is unusual for me; migraine symptoms but also lost the feeling down my right arm and last two fingers and couldn't speak properly at all for about 24 hours. (I don't mean my usual speach problems I mean I couldn't make the words come out - my tongue wasnt working) lost perception in right eye as well - worse than a usual migraine.
    Bizarrely, while American hypertension charities put severe headache down as part of a TIA, in the UK it says headache doesn't happen.
    Most people I nursed who had TIAs did have headache with it. But I didn;t nurse many people with them.

    If anyone has ideas or info I'd be pleased to see it :)
     
  5. Questus

    Questus Senior Member

    Messages:
    125
    Likes:
    87
    Under supervision and with a prescription from a doctor, preferably from a cardiologist.

    Cardio rehab is recommended by every CFS expert I'm aware of, as well as all the dysautonomia experts.

    It's usually done in a hospital or in a cardiologist's center. It's done while hooked up to a BP machine and with pulse and fluids being monitored as well.

    Make sure your insurance covers it before starting.

    It's a way of 'working out' your heart in a safe and supervised way. The end result is your sympathetic and parasympathetic nervous system makes postural changes easier, and gets your heart 'in shape.'

    Meaning it will make the heart more fit and slightly larger. As I say it's done under careful supervision.

    Walking and other exercise can work also, but it's important not to overdo it when exercising on your own.

    Am due to start soon. Am scheduled for type 3, as type 1 and 2 are for patients who have had heart surgery. Type 3 is for 'maintenance' and most likely to be covered by insurance if you have dysautonomia.

    I've read of people who have been turned down by their insurance companies, but the cardio rehab centers agreed to do the rehab for the price of what their co-pay would be if it were covered, so it's worth looking into.

    Best,
    Questus
     
  6. taniaaust1

    taniaaust1

    Messages:
    8,227
    Likes:
    5,197
    Sth Australia
    I'd say probably yes to that as far as the high BP goes. I base my yes on the fact that just after I found out I had orthostatic hypertension (eg 170/136 ) I did a lot of searching online for info and ended up in some autonomic problems forum and came across there two different people who had the same issue. Both of these gave me warnings to immeditately find a specialist for it as both of them... they'd had their heart actually damaged by it due to it not being treated by doctors soon enough. They were in heart failure due to it and now under cardiologists care due to heart failure.... (that was my first experience with coming across people with this .. they werent ME/CFS patients but just people who had severe othostatic hypertension (with big dips like mine.. very up and down)... one had his BP going up to around the level mine does.. while the other had his/hers going up far higher.. in the 200 range and unfortunately had doctors ignore their issue until it was too late).

    Hearing this from two different people.. well really had me freaked out for a long time. (Ive since developed two leaky heart valves..but dont know if it has anything to do with the orthostatic hypertension or not). Neither of these were old people.. one was in his late 30s/ early 40s (he was around my age or a few years older) I think it was.. while the other was in his 50s.

    There has been one study done on the rates of orthostatic hypertension in the normal population.. and the result if Im remembering properly was 1% (the rates of this increase the older one gets with most the cases in the elderly.. no one in the population study who had it was my age). I'd love to see a study done on the rates of this issue in ME/CFS as I know it is well above the 1% and it is happening in us even when younger.

    I suggest to look up the wikipedia for into on orthostatic hypertension . I just remembered that the ones who were "big dippers" with that (sudden ditches in BP from a high BP).. in studies were found to be a higher risk of strokes (all groups with it may of been but the "big dippers" were the worst risk group of it).
     
    Shell likes this.
  7. taniaaust1

    taniaaust1

    Messages:
    8,227
    Likes:
    5,197
    Sth Australia
    Questus.. the heart rehab stuff sounds interesting. I hope you do us an update on how it went after you try this.
    (I havent found even daily exercise to be helpful for my dysautonomia)
     
  8. Shell

    Shell Senior Member

    Messages:
    477
    Likes:
    613
    England
    taniaaust1. Thanks for the info. I'm pretty sure the major migraine I had last week was a TIA, and I have wondered about stroke. Thanks to dh nagging the hospt I have a cardio appt in March rather than May. I've been offered the money to go privately but it looks like the Pots spec I am seeing doesn't take private. He's a Professor and has his fingers in a a number of pies so he is spread too thin. I wish there were more medics out there willing to learn something.
     
  9. ramakentesh

    ramakentesh Senior Member

    Messages:
    525
    Likes:
    82
    Once again I will reiterate the point that the delineation of POTS into those below and above 600 NE standing has been challenged as having equiovocal etiological significance. All that delineation tells us is that the patient has NE levels above or below that arbitrary level. Look at the article from Vanderbilt that I posted recently and you will see that since the same percentage of patients above and below 600 NE standing had signs of neuropathy (failed QSART) therefore it may not have pathophysiological significance. :)

    Originally Blair Grubb and vanderbilt delineated POTS into the way you described suggesting that 90% of POTS patients had a type of peripheral dysautonomia and the other 10% had NET defiency.

    First problem encountered with this scenario was that only one patient EVER was found to have a genetic defect in NET expression. And then Net inhibition in these cases below (both induced and in POTS) did NOT result in increased NE levels despite the presumption that reduced clearance would cause build of NE at the synaptic cleft:

    http://www.ncbi.nlm.nih.gov/pubmed/18187607
    http://www.ncbi.nlm.nih.gov/pubmed/19808400

    Then Julian Stewart and Marvin Medow started there work adopting a completely different delineation framework - eventually identifying the larger hypovolimic subset mentioned above in your MAYO article. these patients are the low flow/hypovolumic patients and again these patients often have elevated NE levels and increased MSNA firing rates (the true measure of sympathetic excess):

    Angiotensin II/low flow POTS (low blood volume, high ang II, low Ald and impaired ang II receptor vasoconstriction):

    http://www.ncbi.nlm.nih.gov/pubmed/16262605
    http://www.ncbi.nlm.nih.gov/pubmed/21266211

    Many of these patients have postural hypertension and increased NE.

    Mayo has until recently presumed that most cases of POTS of all types are autoimmune - with the comment here that hyperadrenergic features are compensatory or excaccerbating:

    http://www.ncbi.nlm.nih.gov/pubmed/17352367

    However this work was the next game changer in relation to theoretical etiologies of POTS:
    http://www.ncbi.nlm.nih.gov/pubmed/22723437

    Again of significance is the finding of NET defiency potentially without elevated NE levels.

    MIBG results confirmed this finding but siggests taht 4 out of 20 POTS patients may potentially have NET deficiency (originally suggested as the causal mechanism of 'Hyper' POTS):

    http://www.ncbi.nlm.nih.gov/pubmed/19687022

    So what am I trying to say here? Well I am saying that while papers currently suggest that orthostatic levels of NE below or above 600 are significant in terms of delineation of POTS into hyper and non hyper (presumably by this you mean Neuropathic) since the same levels of QSART results were abnormal in both POTS patients below and above 600 NE orthostatic, since NET deficiency (which is the causal mechanism proported by those that original created the 600 NE delineation threshold) may not actually cause excessive orthostatic NE levels, and since the paper from Mayo that you posted above suggests that NE levels above 600 orthostatic are seen in a much larger subgroup of POTS patients than just 10%, I am suggesting that it may not be the one 'critical' factor that means anything OTHER than some POTS patients have Norepinephrine levels above this amount, some below.

    Finally your posts suggests that there is a fixed and confirmed understanding of the primary etiology of POTS in ANY case. This would be an incorrect conclusion. Currently there are about 24 postulated etiologies for POTS with varying hemodynamics, none of which are mentioned in the papers you have posted. These include:

    Vasoactive peptides in Postural tachycardia:
    http://content.onlinejacc.org/article.aspx?articleid=1217866

    Excess vasodilating molecules in POTS:
    http://www.ncbi.nlm.nih.gov/pubmed/21920536
    http://ajpheart.physiology.org/content/early/2011/05/31/ajpheart.00171.2011

    And autoimmune etiological mechanisms:
    http://edrv.endojournals.org/cgi/content/meeting_abstract/33/03_MeetingAbstracts/OR48-1
    http://onlinelibrary.wiley.com/doi/10.1002/prca.201200049/abstract

    And there are many more...

    So in conclusion, im not trying to be a pain, and I agree that many papers suggest that 600 NE orthostatic levels are the threshold for delineation, as I have demonstrated above that nothing about POTS, its primary etiologies and its delineations are fixed. All are theoretical frameworks that may or may not stand up to the rigour of further peer-reviewed research.

    But you guys can believe or accept what ever you like.

    two more significant articles:

    Same level of neuropathy in Hyper and non Hyper POTS:
    http://www.ncbi.nlm.nih.gov/pubmed/20035362

    Current understanding of POTS etiological mechanisms from Vanderbilt incorporating work from Australia on epigenetics:
    http://www.ncbi.nlm.nih.gov/pubmed/20035362

    Im not sure about your comment regarding there being a definitive levels of NE required for a MCAD diagnosis. The patients i know who have been diagnoised with this or claim to usually report periods of extreme postural hypotension, fainting and their diagnosis was based purely on measure of a few different biochemical markers.

    More recently a doctor in New York claims that all patients with EDS and POTS have MCAD. Bu tso far evidence is minimal.

    Now moving on from all this and we can agree to disagree if you like, mestinon is very helpful for me as are volume expanding agents. My results were NE far above 600 standing, very high MSNA firing rates and obvious orthostatic hypertension. However I also haev neuropathic features and signs of autoimmunity. You will find that many of us dont fit neatly into any of the proposed catagories.

    Read the article of peptides - its quite interesting :)

    Hope I didnt offend. Not my intention and I see where your coming from but I have formed a different view over time through speaking to various people.
     
    Shell and voner like this.
  10. voner

    voner Senior Member

    Messages:
    237
    Likes:
    151
    R,

    that is such a clear explanation of the thinking of the various research groups. It has been so confusing for me. thank you.

    what is the guess on the beneficial action of mestinon when used for POTS patients?

    in the past, I have had some interesting experiences with it.
     
  11. Questus

    Questus Senior Member

    Messages:
    125
    Likes:
    87
    A copy of of Methyldopa research at Vandy on hyper pots and CFS patients. Note the very long time frame of the research study, does not end until middle of 2013.

    Interesting that it's inclusive of a combination of cfs and post patients.

    I'm currently taking Methyldopa for hyperadrenergic pots, and am following all research. Hoping this one will end with success.

    http://clinicaltrials.gov/show/NCT00580619
     
  12. Questus

    Questus Senior Member

    Messages:
    125
    Likes:
    87
    Methyldopa has been (at the initiative) amazing, and I mean amazing, immediate (and I mean immediate) improvement for me. OMG, just started it, at 250 mg on Wed, and then 2 times 250 mg. max dosage dx to me on Thursday (500 mg per day), yesterday, and last night I slept and actually dreamt for the for first time in months. Literally months. Sleeping, dozing and dreaming.

    This is amazing to me, don't want to 'jinx' it but know enough to know this is real after a half dozen meds scribed for hyper pots, (lists of tried drugs below with no response.) No wonder Vandy loves Methyldopa for hyper pots and CFS patients with hyper pots!!

    Slept, dozed, and finally dreamed for the first time in months last night, and I expect the same tonight. Amazing, am walking on air.

    Can not 'speak' about the awfulness of not sleeping or the final wonderful grace of finally sleeping as I'm trying to say.

    Amazing. And after two BB's, Clonodine, Mestinon, and finally! Methlydopa.

    I'm saying good night. I'm going to sleep. Will report back on hyper pots, CFS, and Methyldopa.

    Very best, Questus
     
    charlie1, Valentijn and camas like this.
  13. Questus

    Questus Senior Member

    Messages:
    125
    Likes:
    87
    Methyldopa has been (at the initiative) amazing, and I mean amazing, immediate (and I mean immediate) improvement for me. OMG, just started it, at 250 mg on Wed, and then 2 times 250 mg. max dosage dx to me on Thursday (500 mg per day), yesterday, and last night I slept and actually dreamt for the for first time in months. Literally months. Sleeping, dozing and dreaming.

    This is amazing to me, don't want to 'jinx' it but know enough to know this is real after a half dozen meds scribed for hyper pots, (lists of tried drugs below with no response.) No wonder Vandy loves Methyldopa for hyper pots and CFS patients with hyper pots!!

    Slept, dozed, and finally dreamed for the first time in months last night, and I expect the same tonight. Amazing, am walking on air.

    Can not 'speak' about the awfulness of not sleeping or the final wonderful grace of finally sleeping as I'm trying to say.

    Amazing. And after two BB's, Clonodine, Mestinon, and finally! Methlydopa.

    I'm saying good night. I'm going to sleep. Will report back on hyper pots, CFS, and Methyldopa.

    Very best, Questus
     
  14. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,691
    Likes:
    10,113
    Amersfoort, Netherlands
    Great news for you personally, and very interesting from a POTS perspective. I have NMH but not POTS, and benefit from an NRI (essentially increasing the impact of norepinephrine), whereas with POTS you're getting good consequences by dropping the very neurotransmitter that I find beneficial to raise.

    Dopamine, norepinephrine, and epinephrine levels, or related enzymes/receptors/etc might end up being a useful biomarker for distinguishing between NMH and POTS ME patients.
     
    Questus and ahimsa like this.
  15. Questus

    Questus Senior Member

    Messages:
    125
    Likes:
    87
    Not sure why my posts are not showing up on PR? Moderator?

    Anyway, here's a really interesting clinical trial Vandy has been doing on POTS, and CFS patients and Methyldopa.

    The study has been going on a long time, and will be finished later this year.

    Find it fascinating that Vandy has been studying POTS in CFS patients. I was not aware that this study including that combination.

    Was fascinated by this paper, because Methyldopa is finally the medication that's working for me.
    Am very grateful.

    It's been a long ride! Two beta blocker had horrible results, (probably due to causing mast cell degranulation) in addition to causing my BP to drop to 80 over 40 and and 70's over 50's. Then Clonodine, which caused very strange symptoms that I couldn't tolerate, then Mestinon at my request, although I've since heard that Mayo does not recommend Mestinon in hyper pots patients. A bad fit for me. Could not tolerate even small amounts.

    Methyldopa quiets the sympathetic nervous system which is overactive in hyper pots patients. In my case the high norepinephrine made it so I could not sleep for more than an hour. I would wake abruptly, and have an extremely difficult time getting back to sleep for another hour. Occasionally two hours. After months of this, it became unbearable and impossible to function.

    So am finally sleeping, for two nights. It's been amazing. Am so grateful for some relief.

    Here's the clinical trial from Vandy.

    http://clinicaltrials.gov/show/NCT00580619
     
    ahimsa, camas and Valentijn like this.
  16. Questus

    Questus Senior Member

    Messages:
    125
    Likes:
    87
    That's interesting Valentijn,

    Yes, am trying to 'disable' the sympathetic excess with Methyldopa. Didn't mention it earlier, but not only was my NE over 1400, but my dopamine levels were very high too. It's taken me a while to try and make sense of all this, but it seems dopamine is something of a precursor to Norepinephrine, so it make sense.

    This is a very cool website that talks about how the autonomic system works in a way I'd never seen and really liked.

    Below the words 'autonomic nervous system' you'll see arrows to the left and right on the sides. Start clicking through the arrows to the right, and it will give you information from different angles. 'Flashcards" so to speak. So if you don't understand an explantation one way, it may click with you from a different angle.

    Best,
    Questus
     
  17. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,691
    Likes:
    10,113
    Amersfoort, Netherlands
    Yeah, dopamine becomes norepinphrine, which in turn becomes epinephrine.

    My results were pretty weird, with that progression in mind. I went from normal dopamine, to low norepinephrine, to high-normal epinephrine. I still haven't seen any explanation for how that can happen :p
     
  18. Questus

    Questus Senior Member

    Messages:
    125
    Likes:
    87
    I saw the doctor last week at MD Anderson regarding my work up for Mastocytosis, and he has referred to an endocrinologist at MD Anderson for further testing regarding my high norepinephrine levels. He's not satisfied that an NE level of over 1400 is 'only' relevant to having hyper adrenergic POTS. He said that a NE level that high is indicative of several types of cancer, (not just pheo's. )

    Am hoping the endocrinologist there can address not just the high NE, but HPA axis issues and cortisol issues as well. I have Hashimoto's thyroid disease which is auto-immune.

    Have a feeling this endocrinologist will have an interesting perspective.
     
    taniaaust1 and ukxmrv like this.
  19. ahimsa

    ahimsa Senior Member

    Messages:
    1,079
    Likes:
    989
    Oregon, USA
    Hi Questus,

    I don't see any link to a website about the autonomic system in the message above. Maybe the link was in a previous post that I missed? Or the link is there but I just can't find a way to see it or highlight it?

    Anyway, would you mind posting the link again? Thanks!
     
    Questus likes this.
  20. Questus

    Questus Senior Member

    Messages:
    125
    Likes:
    87
    Ahimsa,

    Thank you for reminding me! Brain fog on my part for forgetting to post the link.

    I really liked this website called Quizlet. To the right of the words 'autonomic nervous system' at the top of the page there is a blue arrow to the right. Start clicking on it.

    http://quizlet.com/106468/chapter-13-drugs-affecting-the-autonomic-nervous-system-flash-cards/

    I'm not doing a good job of starting new threads for new information.

    Could use the help of someone reading this with the following:

    Would like to start a thread on seeing an endocrinologist at MD Anderson who was referred to me by the doctor there who worked me up for Mastocytosis.

    He feels my norepinephrine level of 1400+plus is not necessarily the result of hyperadrenergic pots only. (He says high NE is associated with a number of cancers, not just pheo's.)

    When I see this endocrinologist next week, I'd like to ask her about HPA axis issues that are significant in CFS patients.

    I'd like to get some feedback from people here who are knowledgeable on HPA axis issues, and would appreciate someone suggesting the best place to start a thread on it to get information. Am not sure what questions to ask on the HPA axis issues, and would like to be as precise as possible.

    PM me, or post here. Thank you.

    Best,
    Questus


    Thank you for your help.
     

See more popular forum discussions.

Share This Page