Sarah4444

Thanks for the input Janet and Alex. I tried just 15 mg yesterday and it wrought havoc on my GI system. Will try again today...no headache yet anyway.

I have had such a rough time with 15 mg I can't imagine tolerating the full dose at this point.

Will take it with a full meal this time!

Hi everyone,

I haven't been on for a while. I've been doing a bit better and am able to have a bit of a life again, plus am involved in some research and support here in Canada re the overlap of POTS with MCAS and EDS/other HDCTs - keeping busy

Anyhow, I saw my POTS doc recently and he wants me to try Mestinon again. Last time I was only able to manage a few days and then got an unbearable and rapidly worsening headache which resolved when I stopped taking it. I am prescribed 60 mg twice a day, but will start with just a tiny bit and see what happens.

If someone out there is finding it helps, can you tell me what dose works for you? Did you deal with any side effects?

Thanks in advance!

Thank you for all that information. I seem to be having an odd reaction to it. I am only taking 15 mg because I can be quite med sensitive. The first day or so I was quite nauseous but then I thought it was helping a bit with OI, stair climbing and exercise tolerance (and maybe breathing). But then I started having really bad neurocognitive symptoms - shooting pains in my head, a headache that felt like my head was made of glass, visual distortions, loud tinnitus, irritability, severe cognitive fog.

I don't know if this is because I have H POTS (1680 on tilt) or maybe a mast cell thing? I don't think I'll be able to continue it let alone titrate up.

My doctor said OI gets worse overnight and before our periods because of haemodynamic changes that occur at these times (?).

Again, I really appreciate the info.

Can anyone tell me their experiences with Mestinon? I got so fed up this month when my OI flared with PMS. I was so dizzy I could barely walk straight and when I nearly fell down the stairs I realized that at a certain point this becomes not just very annoying but dangerous. I had a prescription for Mestinon from my autonomic doc but had been afraid to try it.

I did a little reading and it seems like a hard medication to tolerate but worth it for some who can:

http://www.ncbi.nlm.nih.gov/pubmed?term=POTS%20mestinon%20grubb

I have just begun titrating up and have been having some expected side effects (nausea) but have also been having significantly increased cognitive impairment, and worse fatigue at the end of the day. I thought I was just imagining it, but my usual brain fog is much worse. I keep walking into rooms and not knowing what I am there for. Also, I play an ongoing game of Scramble with Friends with my husband, and can consistently beat him 9 out of 10 games - over the last few days he has won almost every game (not very scientific proof I know).

Has anyone else had any side effects like this (or others)? I would really appreciate any info about how it affected you, for better or worse, and what doses helped or were too much. I find cognitive impairment one of the most discouraging symptoms.

Thank you in advance.

I am not sure Issie. I know we'll have access to anything they publish obviously, and I will keep people posted about anything I learn if I have their email address in the group. He will be sending out the first questionnaire before long - I think they are just trying to learn about us to start.

Hello everyone,

One of my doctors is starting a study to see if they can figure out why there is such a significant overlap among people who are diagnosed with POTS, a mast cell disorder, and some form of joint hypermobility.

If you are interested in learning more or in participating, please go to the following link:

http://www.ednf.org/index.php?option=com_content&task=view&id=2087

Wishing everyone well!

Sarah

Ernie, I'm so sorry this happened. My POTS doctor is Dr. Carlos Morillo in Hamilton, ON. Not exactly close, but he is very good. He has referred me to a geneticist he works with at this also seems to have a genetic component for me.

Yes. Crouching, bending over and climbing stairs are all really hard on me.

I began having difficulties in my teens and am now in my early 40s. My impression is that I have an underlying HDCT like EDS as well as MCAS, and things along the way have bumped up the severity of my illness - an electric shock, virus, car accident, pregnancy... It's been a long downhill slide for me with POTS/MCAS becoming very evident and severe a couple of years ago.

Thanks for the info. For some reason replies aren't being sent to my email anymore, I'll have to check my settings. I guess I will bring this up with my POTS doc and see what he says. I am worried about having any medical procedures these days.

Thank you everyone for all the advice on this thread. I also find it hard to strike a balance between honesty and acting as normal as possible.

Tennille, I'm sorry to hear things are still so awful for you. Did you ever get anywhere looking into MCAS?

Thanks for posting this info. I have a prescription but still haven't tried mestinon. I still have intermittent but significant nausea and D and worry about making it worse. Also I am so cold in the winter, I can't imagine being colder...wouldn't mind feeling stoned though (kidding). Please keep on updating.

Swimming seems to be one of the few things I can do for exercise that doesn't cause pain. I used to swim in public pools, but several years ago the chlorine starting causing me to get very itchy and rashy. We ended up getting an exercise pool put in our garage that uses sodium bromide rathen than chloride (what they call a "salt water pool"). When my POTS was at its worst I couldn't swim at all - I basically had total exercise intolerance. After learning what I had, starting midodrine and MCAS meds, etc. I was able to start swimming 2 minutes a day but more than that made me sicker. I very slowly worked my way up to 20 minutes a day, but have to time it carefully with midodrine - I have to exercise about an hour after taking it, not near to when it wears off. I also have to wash all the chemicals of my skin right afterwards, and can only swim very lightly - exertion also makes me worse, and I have to be careful getting out. But I think it does help overall.

Hi everyone,

I haven't posted here for a while, which feels weird because this site was such a life line for me when I first figured out I had POTS. I have been trying to learn more about what is going on with me, whether controlling MCAS will improve my POTS, what the connection is among HDCTs like EDS and MCAS/POTS, trying to actually do more things when possible (I can sometimes empty my dishwasher now - yay! (semi-sarcastic)), and have been trying to recondition myself. My small dollop of daily energy has been easily used up recently.

But it's this last thing, reconditioning, that I am wanting to ask about. I am learning what I can about all my diagnoses, and have now come full circle to the one that has been most noticeable for the longest time - pain. I got a bit of relief from pain while my POTS was so bad that I could barely move, but now that I am trying light exercise it is back.

It seems to me that the pain I have has many layers, if that makes sense. There is the hypermobility/joint pain, but I feel like the pain in my trunk and legs may also have other components as well. Even as a teen I had episodes of pelvic pain. I am now wondering if some of what I call "low back pain" may have some vascular component. Has anyone here learned more about Pelvic Congestion Syndrome? Are there any studies/researchers/tests or anything else that you could recommend to me? I see my POTS doctor in March and he is probably the only person who would listen to me about this topic. Just to make things even more complicated, I am told that many patients with mast cell disorders also have pain in their pelvic/low back/upper leg areas.

I find it hard to talk to doctors about pain. I have been pretty lucky getting diagnoses of POTS, HDCT and am working on MCAS - these doctors have treated me quite well. However after having pain for years (and seeing doctors and being treated for it...) I saw one pain specialist not too long ago who told me that MCAS did not exist, EDS patients only have pain if they have dislocations (which I don't), I "may" have POTS but that doesn't cause pain...you get the picture. She basically said I was making it up. This was after I brought her reports from Dr. Francomano, my autonomic doctor, etc. (none of which she read - she had her student read them). I know she is just one of the bad eggs we come across, but the experience has made me very reluctant to broach the subject of pain with any other doctors.

Sorry this ended up so long - hope everyone is doing as well as possible.

Nope. The best they have been able to manage here so far was a 24 hour urine histamine - not helpful. I am in Ontario.

Well, this is what drugs.com had to say about doxepin and midodrine:

MONITOR: Midodrine, an alpha-1 adrenergic agent may lead to bradycardia if administered concomitantly with any agent that directly or indirectly reduces heart rate. This may be most important for beta blockers and tricyclic antidepressants.

MANAGEMENT: Patients should be advised to discontinue midodrine if they experience signs or symptoms of decreased heart rate (i.e., slow pulse, dizziness, syncope, cardiac awareness) and to contact their provider for reevaluation

I have been taking them together for almost a year and have no signs of bradycardia (in fact my heart rate still runs pretty high overall) but it's good to know this. I'll talk to my pharmacist about it, but at this point I am not too worried - the "normal" dose of doxepin is about 10 times higher than what we take for mast cell stuff so maybe on such a low dose it's not as much of a concerm? Thanks for the info, anyway.

I also get these episodes, much like Erik's description. I have always ascribed them to brief periods of adequate cerebral perfusion. I also have this feeling like I want to shake everyone around me and ask them if this is what it feels like to be normal, why aren't they dancing in the street or something? However, I do realize we all have our own problems...

Hey there, sorry it took me so long to notice your post. I have also been taking a little internet holiday. I found that midodrine didn't help me enough until I got to 10 mg three times a day - the only side effects I notice are creepy scalp and that sort of thing (although I did notice one person mentioned that frequent urination can also be a side effect, but I had that even before starting it so who knows).

Doxepin 20 mg at night has been a huge help to me, and I take it along with midodrine - haven't noticed any major problems with the combination. Who told you not to take them together?

Finally, I think that Nalcrom/Gastrocrom is also helping but it seems to work slowly over time. I still have lots of OI but am doing much better than last summer - my next drug trials will be ketotifen, then low dose benzos (which Dr. Afrin has found work as mast cell stabilizers) then Mestinon.

I hope this helps a bit, please let me know what happens. I have learned most about mast cell meds from other patients, especially the subgroup of us lucky enough to also have POTS. Take care.

Thank you both very much, that is helpful information - will let you know if anything really weird happens!

I don't seem to have much benefit from compression hose, but recently tried a couple of abdominal binders and think they might have helped. The problem is comfort - I tried a thick girdle-like thing that was really annoying, and also Spanx which I liked but which are really hard to get on and go to the bathroom in.

Can anyone give me any tips? Are there any out there that are thinnish and at least somewhat comfortable/practical?

Hi everyone,

I recently saw my POTS doctor and he recommended that I change the way I take midodrine. I currently take 10 mg every four hours and he thought I should try 15 mg twice and then 10 mg. When I tried taking 15 mg it made me feel awful - tight chest, head pain, and just really strange (seemed like worse OI). Has anyone had any luck with 15 mg doses of midodrine? Side effects seem manageable at 10 mg (although even that took a bit of adjusting to) and I wonder if taking 10 mg every 3 1/2 hours might work better than the 15 mgs all at once. He said the most I should take in day is 40 mg.

He also suggested I try Mestinon, but said he had no experience using it in patients with MCAD. I would be interested to know what kinds of things people have dealt with when they first started Mestinon, so if I have any side effects I can maybe figure out if they are common ones or if they are particular to combining Mestinon with mast cell meds.

Thanks in advance, and I hope everyone is having as good a day as possible.

Issie, just to complicate things I seem to have similar features to you but rarely get high blood pressure readings. But I do officially have the hyperadrengergic type, with exceptionally high NE/E on standing.

Please do keep us posted, I'll do the same!

No, I was in Toronto. Word seems to be getting around, though!

Hope, can I ask who gave you this diagnosis? I recently saw a doctor who told me he had seen three patients with MCAD/POTS and EDS/hypermobility in the past two weeks.

I really hope you can find some meds that help him - the MCAD meds have helped me quite a bit, but I still really struggle with OI.

I have been diagnosed with hyperadrenergic POTS. Does that mean I have low flow POTS? I feel like I have sphlanchic pooling and peripheral vasoconstriction. I find these different ways of categorizing patients to be confusing.