L4UR3N

It also seems more common in Ehlers Danlos though I'm not sure why.

Not that are reported in the drug info, but it is definitely doing something right. I am wondering if it makes you retain fluid, though I cant seem to find any information on that. My blood pressure is actually a bit better as well.

They are finding endometrosis lesions to have significant mast cells.

Issie

...well maybe this is why mine was positive then!!!! lol

I must be the only weirdo that has positive urinary methylhistamines, but does not seem to respond to H1 & H2 blockers (flushing is no better on them than off them). My tryptase was normal though, so I am wondering if food consumption can possibly affect the urinary methylhistamine levels.

I also find it hard to believe that so few patients are found to have this. Perhaps they are not doing the test correctly, or are not able to catch it. I know that my doctor did not instruct me very well (he did not say anything about collecting my urine only AFTER a flushing episode), I only knew what to do because I did my own research online.

It does seem strange that there are so many on this forum with MCA issues, yet so few in Dr. Grubbs office.... not really sure what to think

Proctoclysis is an interesting (though most likely uncomfortable) idea. Home infusions sound fantastic! It might be worth trying....

Has anyone here ever taken the antibiotic Keflex?

This is the second time I have taken it and I find it too unlikely to be a coincidence that I feel BETTER while on it. I have taken other antibiotics before that do not positively affect my POTS, so it must be some side effect that this particular one is creating. I have been trying to figure it out because it has absolutely made me much less tachycardic-- to the point that I am really sad to be finishing up the last few doses. I'm talking about a 15-20 bpm decrease according to my heart rate watch.

I finally found something with positive reproducible effects and it has to be an antibiotic of all things.

It cant hurt to try them as you will just pee them out if your body cant use them . I take a B complex and extra B1 twice a day. I also take 10000 of vitamin C daily (may increase it soon). It most definitely helps the POTS as well as the PVC's.

Anyone with any heart rhythm abnormalities should get their electrolytes checked-- particularly magnesium and potassium. Magnesium supplementation has been shown to help PVC's, though it will only help if you are low in magnesium (and should not be taken if you are not low!!). Mag sulfate is actually one treatment for V-tach. It is especially important for those with POTS to have their electrolytes checked because we tend to drink abnormal amounts of water and therefore can actually flush our electrolytes (and vitamins!) out of our body.

Also just wanted to mention that any antiarrhythmic is also a proarrhythmic (meaning that it can actually cause more arrhythmias). Typically they prescribe antiarrhythmics for more serious rhythm disturbances and not for isolated PVC's. There are of course exceptions, and your doctor would determine your risk. Generally cardiologists are not that concerned with isolated PVC's in a young person with no structural heart disease. That being said, they sure are annoying!!!!!! lol

Hope this helps someone .

Yes lifting things definitely trigger them, as well as bending forward or suddenly moving (suddenly increasing my heart rate). Beta blockers actually made mine worse, as did birth control pills.

I get bigeminy (one every other beat) as well as couplets (two in a row) and have on occasion had short runs of v-tach (3 or more PVC's in a row).

Taking B and C vitamins has helped them to calm down a bit though I am not entirely sure why.....

I get PVC's and PAC's all the time (literally hundreds a day). They are very annoying and can really take your breath away. Definitely get your electrolytes checked out because an imbalance can absolutely cause these. Make sure they check your magnesium level as well (though it is one of your electrolytes they dont always check it with sodium and potassium). Magnesium supplementation is said to be helpful to some people, though it did not ever work for me. The only thing I have found to help them is B and C vitamins. ...........and birth control pills make them a MILLION times worse!!!!

On the flip side of the coin if your pulse ox is always reading 100% that is a problem as well. The pulse ox just measures the oxygen saturation of your blood-- not the amount of blood. So for someone who is hypovolemic, their blood will most likely always be 100% saturated in order to carry as much oxygen as possible to their tissues.

With low saturations, other factors such as PVD can play a role as well.

The best way to really know what is going on is to get an arterial blood gas (ABG).

Same here Fi. Progesterone makes me a million times worse. I have heard some others say it makes them feel better though, so like anything else you may not know until you try it

Have you had any saline infusions lately?

I definitely get this too. I basically have all the symptoms of autonomic dysreflexia except instead of bradycardia, I have tachycardia....and I have not suffered a spinal cord injury (although lesion is still fair game).

Sorry if this was already posted somewhere. I dont remember reading it before, so thought I would share .

http://www.sciencedaily.com/releases/2003/09/030916073900.htm

Anyone had any experiences with taking it? I seem to remember a few people who said it was actually helpful to them. In the article it states that it may make orthostatic intolerance worse, however then it says that it attenuates the response of the sympathetic nervous system to orthostatic stress, which may actually help some of us (hyperadrenergic types whose primary etiology is SNS over activity).

Im so glad you wore the event monitor!! I am a little confused though because typically if someone has even a 2 second pause they put a pacemaker in.... 3 seconds is a very long pause. Im worried about you. I would almost urge you to get a second opinion. It may be that the doctor who did the ablation is trying to save himself from having a "complication" from the procedure and hoping things will just resolve (of course I cant speak for him, but I cant think of any other reason why he would be waiting to put a pacer in with a 3 second pause).

I hope things get worked out for you soon! Let us kmow how you are doing!! <3

Unfortunately there is no way to know without trying it . I agree with the others though- you might think about asking for an injection without epinephrine. I have had my own personal nightmares with dentists and gum surgery-- please learn from my mistake-- do not just endure the pain.

Definitely. Bright lights are the worst for me, followed by sound and then smell. Grocery isles that are too cluttered, with tons of items give me horrible vertigo, as do florescent lights. I'm almost blind driving at night unless I'm on a road by myself. Kind of scary really...

Also good if you need to keep your job, or get hired into another one!

so sorry this happened to you! Does your EP know about your bradycardia and weird pauses? Sometimes (depending how much of the sinus node was ablated) they need to put a pacemaker in. Make sure to let them know what is going on with your heart. I really hope things get better for you!!!! <3

As far as the IST goes, I think the lines are blurred a little as far as what is hyperadrenergic POTS, and what is IST. My sister has IST and has had 2 ablations for it. Unfortunately they did not work (and she described odd things afterward with her heart like what you are describing). She is on a high dose of a beta blocker now which seems to be working well for her.

Hang in there, and make sure to tell your doctor how you are feeling!!

I have a bright light therapy lamp (to help with regulation of cortisol and melatonin) and it has built in negative ion therapy. I have not used it in a long time, but given this discussion I think I'm going to try it again!!

Someone may have already mentioned this (sorry if they have!) but I am wondering if it has something to do with all the chemicals? I have a difficult time as well, even when I just go in for a haircut. I have noticed though that it is the smell and the chemicals that bother me the most (that and when they stick you under the dryer with that stupid cape on-- it's just way too hot!). Whenever I get my hair highlighted I get all my symptoms x10.

My compression stockings are the ONLY way that I make it through a day at work!!! I like the Jobst Relief waist high stockings in 30-40mmHg. They are one of the few things that I can say make a dramatic difference in my POTS!!!

It's something I definitely need to work on, but one thing that does help me is to take a moment each day (say when you are in the shower, or when you are brushing your teeth, eating breakfast, etc) and think about just one thing that you are thankful for. Make sure that it is a different thing every day, and try to make it very specific. Remind yourself of it throughout the day, and you will start to automatically feel better and more positive. Sometimes when we are depressed we forget all the things that are good in our lives (even if most of it seems pretty bad, there is always SOMETHING good). It helps to try to focus on these things.

I also try to remind myself that I am fortunate to know what this illness is, and have access to some doctors that are aware of it as well. I'm sure there are many people out there with dysautonomia who have no clue what is wrong with them and are very frightened.

One thing that doesn't help are all the videos about POTS that then in the middle of them say "It's not all in our heads" or "we're not crazy". Do you ever hear people with MS, Parkinsons, Diabetes, etc say these types of things? Of course not, because everyone knows better (nowdays anyway). Statements such as "were not making this up" puts doubt into peoples heads where it may not have been before. When people list their symptoms, such as tachycardia upon standing, blood pressures that are all over the place, syncope, etc, these are real objective symptoms that others can see or measure. These are the things that must be emphasized. Symptoms such as headaches, fatigue, vertigo, etc are completely subjective, and while they may be ok to mention they should not be the focus.

Another thing to keep in mind is that even though there is medical science behind the causes of fibromyalgia and chronic fatigue, most physicians today STILL think of these as psychosomatic illnesses (because fatigue, muscle pain and general malaise are not things that can be measured or seen) Lumping POTS in with them has not helped.

I personally have never once mentioned to a doctor that I am fatigued even though this is really an all encompassing issue. Unfortunately doctors hear fatigue and think "LAZY". You really have to demonstrate to doctors that you are sick before they will believe you. SHOW them how your heart rate changes when you get up. Have them take your blood pressure after you are standing for a while. Demand that they order tests which are PROVEN to show results in POTS (such as tilt table, serum catecholamines, etc). GIve them enough evidence, and they will believe you. They may not know how to help you... but at least it will have them scratching their heads a little.

...or you could wear full length ones and cut your own open gusset .. .

I'm pretty much in love with compression stockings too. I wear the full length ones but do not have too much difficulty pulling them up and down to pee. If I had to go very fast though, I would probably just cut my own and maybe reinforce it with some stitching. Solves both issues