Charlotte1

What Else To Try If Midodrine And Florinef Aren't Helping Hypotension?

17 posts in this topic

The tachycardia upon standing (POTS) has been greatly reduced with the help of Mestinon as well as the degree of severity of the dysautonomia symptoms, namely brain fog. My low blood pressure continues though, despite using florinef and midodrine.

I cannot take more than my currant dosage of midodrine (3.5 start of day and 5.0mg 3 hrs later) because it occasionally has caused my bradycardia to become significantly worse. My systolic blood pressure is still lowish -averaging 100 but the diastolic is always low, last week there was a 41 reading, today 48. The brain fog, cold to the bone feeling take over when I get readings like that.

With my diastolic pressure actually getting worse than it was at my worst POTS episodes last year, is it possible something else is going on with my heart or my veins/arteries( perhaps EDS since I'm very hypermobile) rather than simply accepting that the midodrine is not a good choice for me? I needed 2 florinef tablets to get close to a normal reading but gave me horrible headaches so I had to discontinue.

What else is out there for me to ask the neurologist to allow me to trial? I cannot go on a beta blocker b/c of the low heart rate. Unfortunately, he is so immersed in the 'mestinon camp' that when he added the midodrinine to my drug protocol 2 months ago, he told me if that didn't work, I should go to counseling to learn how to cope! What?? Surely there are other drug options out there to raise blood pressure!!

Strangely, Sudafed will often (not always) give me the the most normal blood pressure AND pulse values and I'll feel better than with the other drug aids but unfortunately that only last for about 3 hrs. I have no idea why sudafed would work better than the other drug aids. Does anybody else get results like me? I don't think I should take sudafed 3-4 times/day indefinitely . Or should I?

Anybody have any ideas?

thanks.

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I also have a low resting diastolic pressure (not quite as low as you though - more like 60, high 50s), but for my gender/height/weight that's pretty low!

Sudafed contains phenylephrine - a known vasoconstrictor. If you search penylephrine on the forums you will find others who have experimented with it. You can talk to your doctor about it - he may even say it's okay for you to use regularly.

Are you sure it is the blood pressure itself that is causing you to feel cold, or is it just that when whatever the other mechanism that makes you cold is active, it also causes you to have low blood pressure? Is it a catch 22?

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I have already been diagnoses with hypotension and have been hospitalized in the past for it and after finally being diagnosed with POTS, was taken seriously. That in turn led to me trying florinef, mestinon and midodrine, all with varying degrees of success of various symptoms but the low blood pressure continues. Because my issues don't seem to fit into any one box, I'm once again starting to fall by the wayside with the medical community.

I'm used to seeing overall low blood pressure readings but the frequency of times I get the especially low diastolic reading is increasing, and that's been while I'm on medication! Yet other times its the systolic alone that's very low. This morning, 1 hr after my taking my midodrine and mestinon my blood pressure was still only 88/60. I fear that the low blood pressure is not getting oxygenated blood to my cells causing the cold flashes, leg weakness and brain fog..memory issues...strange head feeling. I sure don't want my brain to have long term effects of oxygen deprivation!

My concern is that something is whacked out with my vascular system as at times my heart rate will be very low as well (in the 40's). None of this seems to concern my neurologist and obviously I'm not impressed that he isn't taking this more seriously. He told me I should seek counseling to help me cope while my lifestyle continues to be altered. Ummm... really? thanks.

Ultimately, fighting the cause of these symptoms would be ideal and I'm working towards that, but in the meantime I guess I'll just have to keep researching for a drug that might help raise the blood pressure. The weak legs and on/off dementia is scary! I bought caffeine pills but am afraid to start them bc I've read they can make POTS worse, and I do NOT want to go through that **** again.If anyone knows of other drugs to increase blood pressure, please let me know but anything that may decrease my heart rate further must be avoided.

Thank-you.

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Do you know of a cardiologist in your area that knows something about POTS. My son also has low blood pressure and uses midodrine 3 times a day. A cardiologist treats his POTS. I am having to monitor his blood daily. However, my son has had an infection of some type this last week and his blood pressure has been on the low side. Could you be sick with a virus or infection? This can mess up your system. As for seeing a cardiologist, he would probably have some ideals about other medications that might help with your condition. Anxiety usually causes high blood pressure not low. Might want to consider seeing a cardiologist.

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I've read about desmopressin being used to help boost your blood volume, thus increase your BP but I have no personal experience with it. Also octreotide can improve the venous tone and reduce the blood pooling particularly in the abdomen.

I'm assuming you're already trying the non-pharmaceutical methods: smaller more frequent meals, compression garments, extra water and salt, elevating the head of the bed etc.

Alex

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i appreciate your responses. I was diagnosed by at a neurology dysautonomia centre and getting that (Canada) was hard enough. But perhaps I can try and talk with a local cardiologist regarding my low blood pressure although its unlikely they'll know much about POTS in my smallish city. No, I am not sick with anything (except sick and tired of dysautonomia!). Bloodwork is fine.

Florinef did very little to boost my blood volume despite salt and water loading. I will read more on the Desmopressin and start a thread if necessary to see if anyone has favorable things to say about it. As for the Octreotide, I've thought in the past it might be a good choice b/c of my stretchy veins and lax ligament issues and also b/c it helps with post prandial hypotension which also can be a problem for me at times The problem is it is an injectable drug so I doubt it would ever get prescribed for me - I'm just not close enough to dead yet and my low readings aren't alarming any professionals so they won't prescribe anything other than the most usual. :( I won't go to my GP to talk about my issues unless absolutely necessary. She always makes me feel worse and knows NOTHING about dysautonomia. So for now, I'll do more research and take sudafed throughout the day. hypertension is not a feared consequence from taking the 3 drugs midodrine, mestinon and sudafed....I'm still lucky if I reach a normal reading.

Thanks for offering your help. Onward and upward....

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Hello. Not sure how much salt you have been taking. Just in case you are still not getting enough, I've included this excerpt from "what helps?"

Increasing salt is an effective way to raise blood pressure in many patients with orthostatic hypotension. Salt helps to expand blood volume. A number of patients find salt tablets and/or electrolyte solutions to be helpful. Some physicians suggest patients who benefit from salt take in 10-15 grams daily (Low, 2000). Other physicians suggest between 3-5 grams of salt per day (Grubb et. al., 2006). Salt is 39% sodium, therefore 15 grams of salt equals 5,850 mg of sodium.

When I get tired of eating salt, I supplement with buffered salt tablets called Thermotabs.

Best wishes

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@IceLizard, I supplemented my diet with 5gr of salt tablets when I was on the .2 mg florinef. There wasn't enough of an increase in blood pressure to make me want to put up with the increased headaches. I added salt to ALL foods, even fruit and water. My stomach started rebelling and I had to slow down on the salt intake which made me feel more comfortable. I don't take hardly any salt now because the latest research shows there is a link between high salt diets and autoimmune disease!

I wonder if it won't be long before salt loading is frowned upon, even by the dysautonomia doctors? Regardless, we all have to make our own judgement calls regarding our treatments. It's never easy :unsure:

Here's the link. http://www.medicalnewstoday.com/articles/257319.php

in the meantime, I'm back to wearing compression clothing and an abdominal binder. Sudafed a few times a day also helps. Still, my best recordings show I still can't a systolic above 100 and the diastolic is very low.

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Charlotte- if you re-read what you posted, "In their studies THEY HAD TO INDUCE autoimmune disease, the salt played an additional role".

"Regev also says it is far too early to say people shouldn't eat salt because it leads to autoimmune disease".

WOW - scary info being thrown around on this site recently. A mouse study.

Again it may be wise to get a urine sodium level before making a salt decision.

Correlational research again. You can correlate anything peeps. Shoe size and intellect, number of pets and number of speeding tickets, windspeed and the pimples on a monkeys butt.

It usually means nothing . :D. Eat salt, don't eat salt, chew on pillow stuffing, lick door knobs, don't lick door knobs- lets not jump to conclusions and scare people ;D

I totally get where you're coming from. I essentially "cured" my ibs by eliminating gluten. I kinda want everyone with an ibs diagnosis to try gluten free.

Ps. Salt tabs are proported to be hard on the stomach. I've never used them personally. You may tolerate sea salt better if you choose to try that again. You know your body best- good luck! Sorry about any typos etc. I really should get on an actual laptop with a normal sized screen :P

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Are you able to exercise? Like ride a stationary bike or begin a walking program. I know that POTS patients can be exercise intolerant but exercise can increase blood circulation and would raise your blood pressure. When my son was first diagnosed with POTS, MAYO encourage him to try and ride a stationary bike everyday. However, he was only able to do it 3 days a week. Every other day and he rested on the weekends. He started by riding 1 minute a day and then increases it a minute each week, I know that many people by the time they get diagnosed with POTS have a deconditioned body and this is not by any fault of their own. It just happens because you feel too sick and awful to go anywhere or do anything. Because doctors are not able to identify the symptoms of POTS quick enough, many people face this ugly side of POTS.

Another thought I wanted to share- is there anyone in your family with an underlying illness. Something genetic that could have been passed on to you. My son has low blood pressure and has to stay on the midodrine for right now. It is possible that my son may be changed to the desmopressin in a few months. However, my son is in the middle of a vaccine challenge and the doctors do not want any new medications introduced to his body. I just wonder what else could be keeping your blood pressure down. An undiagnosed medical condition could be keeping the blood pressure down. Please keep searching for answers and hang in there. If you decide to try the desmopressin, keep us posted.

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Correlation doesn't mean causation right? :)

My philosophy is "everything in moderation", and indeed, let's not scare people.

Alex

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Correlation doesn't mean causation right? :)

My philosophy is "everything in moderation", and indeed, let's not scare people.

Alex

Lol yes ... So true.

Plus one on the exercise bike. Mayo recommended a recumbent bike and I tolerate it well. I kept having issues on the elliptical... Pots can do that ;)

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Sorry, don't mean to scare anyone. Although I will admit that some POTS symptoms can get scary and you don't want to take any chances with your health. I just wanted to encourage you, Charlotte, to continue searching for answers. Low blood pressure is no fun. I have not experienced this myself but I can tell when it's happening to my son. Has anyone mentioned licorice and it's benefits? Alex had a really good article on it and it's effect on blood pressure. Might want to check that article out. I'll bump the post up, if I can find it.

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Sorry, don't mean to scare anyone. Although I will admit that some POTS symptoms can get scary and you don't want to take any chances with your health. I just wanted to encourage you, Charlotte, to continue searching for answers. Low blood pressure is no fun. I have not experienced this myself but I can tell when it's happening to my son. Has anyone mentioned licorice and it's benefits? Alex had a really good article on it and it's effect on blood pressure. Might want to check that article out. I'll bump the post up, if I can find it.

Looney mom- I thought you gave great advice. Not scary at all ;) I think it's comforting to make sure you have a solid diagnosis.

Another thought for Charlotte- have you been fitted for compression? It's supposed to make a big difference over non- "custom" compression. I was told to get fitted in 2009. I still haven't. I wear over the counter compression lol! I'm wondering how much better the properly fitted ones are?

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Wow, that's pretty amazing (at least to me). I hope you or your doctors find a solution soon. Sorry I have no other ideas.

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Charlotte, I also have a stationary bike. I have noticed that exercising on it can really help bump up my blood pressure. Swimming is also excellent. The stationary bike is good because if you feel strange (lightheaded) at any time you can stop.

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First, thanks for your help! When doctors give me the runaround, I feel like giving up so thank you for the encouragement to keep looking for answers!

My mother has had medical issues her whole life and as for me, I've been a fainter since a child (vaso vagal syncope) and then @ 54 diagnosed with POTS, 7 yrs after a hysterectomy for endometriosis (I believe I began a slow decent after that). My physiotherapist does not think that my issues are related to deconditioning although certainly it was a problem when I first started becoming mobile again after being almost completely bed bound for 4-5 months(thank-you Mestinon!).

My blood pressure has been low my whole life and I've become symptomatic with it gradually as I entered adulthood (ex. extremely spacey episodes, fullness/pressure in head, weakness spells, and more)

Most days when I'm feeling not too bad, I take my blood pressure and if its not super low, I go for a walk in the yard and if brain fog/weakness doesn't occur, I venture out for a 20 min.walk. Also, I see the physiotherapist weekly to put joints back into place (hypermobility) and do gentle stretching exercise on a recumbent bed with a Pilates trained instructor. So I am fairly mobile now but not nearly as active as pre-POTS.

We do have a stationary bike that I had intended to use in the winter as I prefer to walk outdoors. Because its downstairs, I never thought of using it on the intolerably hot days when I'm not able to wear the compression clothes. Thanks for the indoor bike suggestion.

I can barely wear the compression clothing now so I won't be looking into the filling my prescription.When the specialist wrote it he said most people don't keep up with wearing them b/c they are just too uncomfortable (too constrictive and hot). I get the highest compression possibly w/o a script at specialty stores.

Endometriosis is an 'autoinflammatory' disease and although I'm uncertain of the distinction between it and autoimmunce disorders, I do think am being affected by AI disorders. I have so many strange neurological symptoms, many which point to Ehlers-Danlos which could explain why my veins are sloppy therefore not allowing normal blood pressure. Also, today I will definitely book an app't with my family doctor and ask for a referral to an immunologist because for the 2nd time in 4 days, my tongue swelled up and became tingly after eating a meal (no new foods) not allowing me to swallow normally and making it difficult to enunciate words properly. And that was despite taking my morning claratin and zantec (MCAS protocol). I had been out for breakfast following fasting bloodwork when it happened so I took a benadryl immediately when I got home. Within a short time, symptoms subsided. I don't know if this is a sudden allergy to foods I've eaten in the past or that symptoms is related to MCAS. but certainly the 3 syndromes (POTS, EDS MCAS) are often seen together.

So, it's frustrating and very complex. It will take time for me to get diagnosed, if at all, but I'll post back on this thread if there is something significant to report.

Thanks for your all your suggestions. May you all get relief of your symptoms soon! :)

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