'blood pressure meds making my EM worse?

I am hoping to find a reason for why my EM has gotten worse this year. I may have already posted about how I suspect my bp medication -- micardis (telmisartin) -- might be a factor. I am stopping it again to see what happens. I figure after a week I should have a definite idea. This time I am going to write down each day any observations of redness, burning, general feeling of being overheated -- that feeling has been pretty constant this year -- also including my bp measurements, so I have a written record of how I feel off my blood pressure medications. Given the fact that it does dilate blood vessels it seems a very likely culprit for making my EM and POTS (dysfunctional autonomic system symptoms) worse. I don't think it's the only one -- I've done a couple of things differently this year -- but I think it's a factor.

I am not sure that I really need the medication as I have lost a lot of weight this year. Not all of the weight I need to lose but I have gone from very overweight to just a bit overweight. I had put on the weight as a side effect to a med I was taking but no longer take.

Has anyone else found that blood pressure medication makes EM worse?

kind thoughts going out to you all :)

blue

Congrats on the weight loss Blue. I need to loose some but it is so hard with activity being so limited and being home bound with little to do but eat. May I ask how you did it? I know blood pressure meds can make EM worse. I have fine blood pressure so I am not speaking from experience just what I have heard others say.

I also know EM can change for the better or worse for no rhyme or reason. It just morphs over time. I used to keep a diary so I could figure this out but just when I thought I was on to something my EM would change again when I had not changed a thing! I gave up after a couple of years. This can still be helpful though in finding certain triggers such as food or meds but It will still probably change on you for no good reason.

AT least if you can find things that make it better or worse you can have some kind of control just probably not complete control. I could be wrong. This is just my experience and what I have heard from others.

I do hope you find out if it's making it worse or not and can find a better med or better yet your new weight loss has helped enough you don't have to take the meds anymore.

Take care Blue

I thought my BP med was an aggravating factor in my EM so I cut my dose in half beginning last week and noticed less intense flares until yesterday. Since then, my feet have been on the warpath so now I really don't know.

Hi Alina,

Losing weight was really a result of coming off a med that made me very fat ( I think it slowed my metabolism significantly much like I have found some antihistamines can do). It also made me hungry. The amount I ate, although quite a bit did not add up to the sort of weight gain I saw on the med. So stopping it meant a lot of the weight just sort of fell off me, as well as being back to my normal levels of hungry. Unfortunately I did not lose all the weight I put on with the med and a year later I am now struggling to keep it off.

I agree now that EM can change for better or worse without reason. I know this. But I don't know it. Despite my experiences, My instinct is still to think there is a key, a way, to control this thing even though I know better. Up until the past year I had quite a lot of control - but not total --over the EM by being careful of what I eat. Some foods definately cause flares. Not all of those foods cause the more unbearable flares. It did mean a lot of denial of foods I like and a very limited variety of diet. Eating out, going anywhere and not taking a prepacked meal of foods I could eat meant I'd go hungry or have to eat what was on offer which often led to flares. It's a difficult way to live but beats intense burning pain. New medications may, or may not, cause flares. It's a bit like rolling the dice when I take anything new. Even a vitamin.

And sometimes there is no obvious cause for flares or for what I've experienced lately -- redness and burning almost 24/7 which I can relieve with a fan, staying cool etc but leads, as you know, to a very restricted life. Exercise for me too has become impossible. A few years ago I used to do pilates at home and I'd set up a fan on either side of me. It was like exercising in a wind tunnel but it worked. Now it doesn't. Despite the fans my skin just starts flaring. And I find that I am always just that too bit warm, if not hot, for exercise even to appeal. I might be wrong but instinct screams at me not to get hotter by exercising and I am developing an aversion to it because the end result is painful flaring. I know you relate to this.

Thanks Alina, I appreciate you reminding me that this EM stuff can have no rhyme or reason. I need to keep a grip on that thought. As I said I know it. But I still struggle with thinking I can control this stuff. I don't know why. It's a bit like only having one leg and somehow thinking you have enough control to grow a second. Which is absurd. Although I do think much of the medical profession tend to think there is some sort of control we could have, if only we'd exercise it. They might not say it outright but it can be there in the subtext, the unspoken expectations that if I just pull my socks up and put my head on straight it would not be such a problem for me. I wish.....

blue

Congrats on the weight loss Blue. I need to loose some but it is so hard with activity being so limited and being home bound with little to do but eat. May I ask how you did it? I know blood pressure meds can make EM worse. I have fine blood pressure so I am not speaking from experience just what I have heard others say.

I also know EM can change for the better or worse for no rhyme or reason. It just morphs over time. I used to keep a diary so I could figure this out but just when I thought I was on to something my EM would change again when I had not changed a thing! I gave up after a couple of years. This can still be helpful though in finding certain triggers such as food or meds but It will still probably change on you for no good reason.

AT least if you can find things that make it better or worse you can have some kind of control just probably not complete control. I could be wrong. This is just my experience and what I have heard from others.

I do hope you find out if it's making it worse or not and can find a better med or better yet your new weight loss has helped enough you don't have to take the meds anymore.

Take care Blue

Hi PJCornbread,

Thank you for your imput, I appreciate it. The sort of experience you have related has happened to me too.

I have stopped the bp med in the past and experienced being less hot and I think if that happens again it might be worth it too stay off it. Last time I resumed I thought about the extra heat but I was quite a bit heavier and also getting a lot of really painful migraines and was quite frightened of my bp spiking too high during a bad migraine. My gp was all for resuming the bp medication as he sees that possibility as possibly being very dangerous. And I don't disagree with him. But what is being forgotten is that living within an overheated body and with, very often, burning and painfulskin is hardly the best quality of life. It sucks. Cutting out the bp medication may mean that even if I have the usual flaring it is no small thing to feel less hot, overheated, than I have grown used to. Feeling hot makes me feel tired, exhausted and very uncomfortable, although it stops short of pain. But it is draining and irritating. I just never seem to feel okay in my skin anymore. Either to hot, or too cold, or burning like crazy. I know a lot of you experience this, too.

I will think I've found one cause only to find it seemed to be pretty much coincidental (although not entirely convinced of the coincidental part). It has happened with other meds, too. Perhaps taking something away that does dilate blood vessels will work for a while but maybe our bodies adjust to that and flare again (because flaring is it's natural state for now, or something)? Sorry but the complexity of EM is making it hard for me to come up with any coherent answers or reasoning.

Maybe it's sort of the opposite of taking a new med. The med will seem okay for a while, might even be helping. Then it stops helping and flaring returns. Perhaps taking something away (a med) can see sort of the same thing happen? Sorry, but I'm going to blame any vagueness of thought and writing on brain fog.

Having said that, PJ, maybe you will find that although the flaring has returned there might be less occasions of it. I'm hoping for that too, I guess. To feel a bit less hot generaly, and a reduction in flares. That would be somewhat better.

blue

PJCorisnbread said:

I thought my BP med was an aggravating factor in my EM so I cut my dose in half beginning last week and noticed less intense flares until yesterday. Since then, my feet have been on the warpath so now I really don't know.

I can't speak to your condition in relation to my mom's but I can say that my mom's flares for whatever her condition is tend to increase with certain foods. And even certain mental states. It seems that anything that increases blood flow or heart beat can increase the pain of EM flares or cause a bad flare. This includes the following for her.

Movies that excite her.

Anything like drama that excites her, like a family drama.

Any exercise that will increase blood flow or heart rate.

Any food, with a lot of salt, very sweet with high sugar or spicy foods. This leaves her with a bland diet with occassional things that are for the most part on the forbidden list which are taken sparingly to dull the food boredom of boring food.

Onions cause her to be upset in the stomach, perhaps not a pain flare, but she uses chives instead which seem okay.

Garlic, she hates and upsets her stomach. I don't know if it affects the feet poorly, as she never has it basically.

She has good blood flow, very good and at times was told she had the vascular system of an 18 year old despite being an old lady.

It seems that anything that can increase her blood flow or even anxiety can cause a flare.

Her blood pressure will go up, as a result of the pain flare, so it can be a cycle. It's important to note with extreme pain

the human organism will respond by having increased blood pressure. This I've heard from doctors, so I believe it and I've also seen this with her. She had a huge stress, which I won't go into and extreme pain from heating of her feet in a

bad place. This caused her blood pressure to spike to 190/93 (pulse not noted from my notes). Within ten or 15 minutes

of cold packs on her feet to bring down the EM flare through no added medication but only chilling of her feet her blood

pressure dropped to 120/something. . . at that time. I don't have my notes handy, but it was the most remarkable drop in

blood pressure without drugs that I've ever seen.

This seemed to show at least for that day, that her BP will increase due to the pain. All things being the same, a fairly normal drug dose and pain pills, the other environmental stresses caused her blood pressure to spike to the point that many would fear a stroke. To take a low blood pressure pill, at least the kind she takes will bring down her BP by perhaps 20 points in a couple hours if the foot problems aren't really changing. It seems to me at least in the case of my mom that the BP is elevated as a part of her overall pain that she experiences. It seems at least in her case that the BP and flares can be inter-related, but more evidence in her case. . . which could be or could not be the same for some others. . . the BP is at least for her a result of the flares.

What comes first the BP spike or the flare? That's almost a chicken and egg theory. I believe, based on my limited experience of seeing the figures with this one case, that both can cause the other, but at least in our case the BP is a result of the pain flares.

For a while after her hospital visit, etc she was off the BP pills per doctors orders because her blood pressure was low and traditionally for her she had a slow heart beat and low blood pressure, before she experienced Burning Foot Syndrome. In her "new life" of (hell?) she experiences high blood pressure. Whether that's some kind of strange autoimmune response, or lack of suppression from previous drugs she was used to or some other damage to the nerves or brain is difficult to say or figure. It's something that the doctors haven't really pinned down.

Some of her side effects, are clearly from the drugs she takes and they cause strange actions that of course normal people don't experience as normal. They are just side effects from the drugs.

I don't know of people with the Nav 1.7 sodium channel defect are hypersensitive in other ways, in other words do they experience more side effects from drugs. If she has that defect, but we don't know that. . . perhaps she is "more sensitive and experiences more side effects. The BP medicine in her case is "maintenance BP medication". We saw in her case that she didn't need it for about two weeks after hospitalization, due to low pulse rates and low BP readings. Once she got more rest and started to get more into a regular routine at home, which doesn't really involve a lot of activity, her BP readings started going up again, perhaps due to more pain flares. I wonder if I had a really good environmental watch and foot chilling routine, like around the clock monitors on her feet with IR skin readers and chilling techniques like an intensive care watch with many people could her BP be brought down by keeping her feet cool enough and her flares in check enough. If that would be possible it might prove at least in my mom's case that most of her blood pressure(BP) spikes are due to pain flares. . .

I can't predict or say that anyone else should discontinue their BP medication. Most doctors will say keep on your medications and be under medical care. With EM suffering it may mean an intense staff and intense monitoring, but more often than not I think doctors will say that we cannot and should not respond to small spikes in our BP or pain flares and over-react with quick changes in our medical dosage. Things like stopping your BP medication OR adding a bunch of pain killers (doubling a dose) or something like that for a flare can be a dangerous path to take. Get specifics on what ranges of pills can be used to increase or decrease in discussions with your doctor. I've heard some bad advise for some made by their relatives, at least through the grape vine, where they are told by loved ones to double a dose and then later on the loved one runs out of drugs, because they are acting without permission of their doctor. This creates more problems, so good communication with your medical provider is a key.

There are of course pill limits especially when you're already on the bleeding edge of pain killers from a dosage point of view. If I get a higher prescription that puts my mom out and makes her more like a zombie in a coma, but she feels less pain while knocked out, is that a good solution? That often becomes a solution we might see with nursing home folks and uncaring care givers. With some EM sufferer's who are already on the bleeding edge of pills, taking more pills and increasing the dosage will almost drive them into a much more dangerous side effect, with side effects that you are warned about on the dosage instructions, because they are already way past the limits of pain killers and medications that other take. I'm sure many EM sufferers here know what I'm talking about, those with severe EM.

PAIN KILLER TANGENT - PILL DOSAGES

In my mom's case added pain killers will help sometimes, and if a dose is late it can cause a flare. If a dose is added early I"m talking about pain killers now, then it may help but more often than not it won't. Extra pain killer, for instance the intense amount one gets from the first day of a three day pain patch will cause more sleep and less pain. The dose may spike and cause more problems as far as pain pills or other pills (nerve meds). It's pretty important to keep a pill diary and note the reactions one has for future reference.

These are just some thoughts. You need to talk to your doctor or doctors about BP medicine changes and keep monitoring the BP. Insure that you are not getting into a dangerous BP zone by taking and logging measurements, BP, skin temp sensors, pliff readings, etc. The tools to do this are relatively cheap and affordable.

Most people that is normal people don't feel sick with HIGH BP and don't know if their BP is high. In my mom's case sometimes she "thinks her BP is high" because her pain is high, but her BP is not high. Perhaps due to the BP medications working and suppressing the BP. Other times she will have High BP and high pain flares. They seem to go hand in hand with her.

Most normal people don't know if they have High BP you won't know until you test and measure. Obviously anything that works and increases blood flow for EM sufferer's will result in a pain flare, so high BP is a sign that more blood is often flowing. It seems logical to say that high BP can cause a pain flare and a pain flare can cause a high BP reading.

You're doctor can tell you what to do at different BP readings, but more often than not they will say take the pills if they are maintenance doses, on a regular basis to keep the BP down overall most of the time. This seems to be the consensus from those doctors, I've spoken with, but remember this is in regards to my mom and every case can be different. There is no substitute for real medical advice from a doctor who knows your case.

my Hi watchman, thank you for sharing all your knowledge and observations.

I totally agree with you about not stopping a med without speaking to a doc first. I have spoken to my specialist and my gp. A number of factors make it a good time to cease the bp med and see what is happening - large weight loss, consistently normal and low bp readings on an already very low dose of bp medication, and a couple of other reasons that brain fog are making it hard to recall. the gp is following the usual protocol for a nearly 60 year old woman, but not the protocol for a 60 year old woman that has POTS and EM. because my bp readings are so variable and thought to be caused by pots (they swing from low, to average, to high) it is not always routine that people with POTS take bp medication. Indded, my sometimes low bp combined with the bp medicstion can cause me to feel faint, weak and nauseous. At a consultation with the specialist who diagnosed POTS and EM we discussed bp medication and he said he was happy for me to just monitor it at this time, if I felt it might make things better. It has taken me this long to decide to do it and the decisiom was EM pain driven. The burning and almost constant feeling of feling like I am a human heat radiator has grown intolerable added to the the fact it is the middle of summer here, and very hot. I have all sorts of problems with medications now and am highly sensitive to most - a problem for a lot of people with POTS. My first experience of EM (not long after I had begun to experience POTS symptoms) was a result of a migraine med. My first really nasty flare of EM was a result of a pain med given to me by injection. Of course I did not even know about pots or em back then. My reaction to the pain med was extreme but I was told that the longest reaction of that type which he had sen once before in a patient was 2 months. God, I thought 'how can I stand two months of this'. It's 13 later now and still waiting for the 'drug reaction' to resolve. LOL

Like yor mother, my em seemed to be triggered by medication. One question I have never asked anyone yet but have definately meant to, but perhaps you have knowledge on: is that even though a med triggered em, doesn't that mean I had the predisposition to em in the first place?

whoops, hands are too painful to type anymore just noe. Need to cool them and elevste them. Thanks once sgsin for sharing all your practical knowldge, watchman

Blue

When my doctor finally diagnosed me, he didn't give me much information about this disease or how to make it better, but the one thing he did was change my blood pressure medication. I was on Lisinopril and he said that it could make it worse as it was (I believe) a vascular dilator. He put me on Amlodypine Besylate instead. I really don't know the difference but may be something to check out. Hope it helps.

Tired

Hi tired,

Thankyou. My bp is still good ( the weight loss has helped but the cyproheptadine that I have started again to hopefully help my migraines and maybe EM is making me very hungry, and I can feel the weight maybe coming back on and this may increase the bp again, sigh). But if my bp becomes a problem it is good to know there are other options.

Flaring has not decreased yet since stopping the telmisartin.

Thanks again

blue

Well, 10 days later and I''m as hot as ever. And my skin is burning just as much as it was before I stopped the bp med. So.

It's the middle of summer here in Australia. And the temps have been consistently high. Our temps aren't coming down enough at night so we aren't getting enough relief from the heat. And there have been no night breezes off the harbour for a while. I guess it's just the heat of summer. I was worse last winter than I'd ever been in earlier winters. So it's been a summer, a winter and now another summer of increased flaring. I have to accept this is my new 'normal.'

I'm using the portable air conditioner I have. It only goes down to 23 degrees celcius, now. It's getting old. Its keeping my skin bearable during the day although I'm not as cooled off as I would like to be. At nights I still need to use a fan at high speed blowing closely on my body and legs and feet and even then I can still feel the burning, as well as the heat given off my body. I felt my legs last night and they were very hot to the touch. I'm definatly going to find a specialist who treats EM. My specialist who diagnosed it hasn't been very encouraging about treatment. I have to find something. The opiates I take for chronic migraine don't seem to help it much at all. I may not be taking enough to treat the EM as well. But I'd like to try the other options first, not up my opiate dosage unless it is necessary.

Blue

I realize that this isn't for everyone and that most people should consult their doctor before doing any of this but I have completely lost faith in all my doctors and since Jan. 5, I have weaned myself completely off Lisinopril (BP med), began taking one OTC Claritin per day, and converted to a HFLC way of eating. My feet still burn constantly but it is definitely less intense and I have lost 15 lbs. and have far more energy. My BP is still slightly high (140/95) but I'm okay with that and I am hopeful it will trend downward as my weight does.