Clonidine If I Don't Have High Blood Pressure?

[Raisin]

I am wondering per others comments if clonidine HCL might help me. I get adrenaline type surges which I have interpreted myself as anxiety but I do not have a psychological component. More like a panic attack without panicking about something specific as another member discussed. The issue I see though is that I do not have high blood pressure. I have low blood pressure usually. My TTT was done without testing the neurotransmitters. I did do a 24 hr. urine concerning these but I wonder if I "did it right" as I just relaxed on the couch all day and didn't move much as I was just trying to stay near the bathroom. Lol. They were in normal range. I have never had my cortisol levels checked either. Any wisdom? Thanks!

[gjensen]

I credit clonidine with reducing the frequency of my surges. It has not eliminated them entirely. It has not lowered my blood pressure.

I am on a very low dose, waiting to see what comes of the Mayo trip.

[Raisin]

Oh thank you gjenson! Perhaps this may help me. Maybe I can grab a little hope in that. Did you have your neurotransmitters tested at Mayo? It sounds like they are really looking at things for you. I will let you know how my rheumatology appt. goes tomorrow!

[bellgirl]

I'm on clonidine, too, but I do have high blood pressure, but I started with a normal B/P of 90/50. I decreased my usual dose of Losartan in half, because of the Clonidine being added. Losartan is an angiotension antagonist, which reduces the amount of renin in the kidney that causes vasoconstriction of the vessels. Clonidine actually works on the alpha receptors in the vasomotor part of the brain stem, which decreases peripheral resistance, then lowers blood pressure. Look it up, because it has a plethora of uses. I only take a .1mg tablet, half tab in the am and half in the pm, because of already being on Losartan. I would talk with your doctor. Mine initially put me on two .1mg tabs a day, and my blood pressure plummeted to 76/44 so I skipped my pm dose, and ran into her the next day shopping, telling her what I did. It's trial and error. It did stop my adrenaline surges for the most part, which I'm happy about. I still tend to have them when I wake up in the morning, but it keeps them at bay at night, and that's what I was hoping for. I still have the temperature censor issues, being cold one minute and hot the next, but that's part of the dysautonomia.

[looneymom]

Tyler has low blood pressure but he takes .3 of extended release clonidine at night. He has been monitored on this dosage at night since he has started the IVIG treatment. If Tyler does not take this, he wakes up drenched in sweat. So his hormones are active at night which makes sense because of puberty. It is trial and error with this mediction. Tyler started with the lowest possible dosage before we figured out what woud work.

[Raisin]

Thanks so much guys. I will do some more homework. At least I know it may be a possibility for me in the future. Hope is a wonderful thing.

[lewis]

I was having these adrenaline type surges as well with no physco connection. I started propranadol 3 days ago and it has really helped. Feel like a muffler has been put on everything and haven't been edgy and having adrenaline type issues and it has not lowered my blood pressure except right after the first dose which came back up after excersizing and has stayed up ever since. Also what are TTT levels? I tried to search for it and came up with nothing.

[DeGenesis]

0.025 mg (25 micrograms, or one quarter of a 0.1 mg pill) once or twice a day doesn't usually affect blood pressure and can reduce norepinephrine levels significantly

[Raisin]

Thanks so much guys.

Lewis, I also take Propanadol currently. It certainly helps me with my tachycardia but so far it hasn't touched my "lion in the room" feeling. My doc said I can increase if I want but I am concerned to do that because my heart rate now sometimes goes down to about 50 during rest. Sometimes during a Tilt Table Test, the docs will draw blood measuring catecholamines. This is very helpful in diagnosing hyperadrenergic Pots I believe.

Looneymom, I sure hope Tyler gets better! You are such a wonderful advocate. It sounds like it might help Tyler's sleep as well?

DeGenesis, it sounds like you are very knowledgable re this. Thank you for responding. I am going to discuss this with my doctors. It is worth a try. I do take midodrine which helps the blood pooling so much. I don't know if I can take them both. I will get the docs opinion. I have a hard time asking for things like this because I am afraid they will think that I am trying to be a doctor myself.

[DeGenesis]

DeGenesis, it sounds like you are very knowledgable re this. Thank you for responding. I am going to discuss this with my doctors. It is worth a try. I do take midodrine which helps the blood pooling so much. I don't know if I can take them both. I will get the docs opinion. I have a hard time asking for things like this because I am afraid they will think that I am trying to be a doctor myself.

You are very welcome.

Hopefully your doctor thinks of your relationship like a partnership, rather than one sided. If your doctor is not like this, I find it best to stroke their ego, and then slip in suggestions on the sly, as if they were the ones who thought of it. This article, although geared towards patients seeking a Bipolar II diagnosis, may be helpful.

http://www.psycheducation.org/depression/doctalk.htm

[gjensen]

Raisin, I take .025 twice per day like DeGenesis mentioned. I like twice per day because it is not long acting.

It was suggested by a doctor that I up the amount and take a beta blocker, so it is done by some doctors.

I would not feel bad about asking about it. I asked for my prescription. I wanted what you want it for. To manage the surges. I also suspected I was hyper at the time. I did present similarly for some time. I have realized since that time, that I present differently in different spells. Right now I would call myself neuropathic POTS. I have POTS and I have autonomic neuropathy, so makes sense to me.

I have had my catecholamine levels checked and they were low normal at the time. Cortisol was normal. Dopamine was low normal. A 24 hour urine test and blood test. Not with a TTT, but like I said, I am convinced that I would get different results in different spells.

Either this illness fluctuates and changes back and forth that much, or my condition is changing.

Yes, let us know how your appointment with the rheumatologist goes.

[looneymom]

If you can get your catecholamines levels checked that might provide a helpful clue. Tyler had one done thorough Pharmasen Labs. It was a urine test nurotransmitter and it measurs Serotonin, GABA, Taurine, Glycine, Glutamate, Histamine, PEA, Dopamine, Norepinephrine, Epinephrine, and Kynurenic Acid. I think the test kit can be ordered online. However, you may have to have a doctor sign off on it to get your insurance to pay on it. It's one of the best test that Tyler has had done. Tyler had high levels of Glutamate, Glycine, Histamine, Dopamine, Norepinephrine, and Kynurenic acid. Giving Tyler the extended release clonidine helps calm his body down at night and helps with sleep issues.

[Raisin]

I am so grateful as I feel I have a new road to explore in attempting to feel better. I have an appt. with a new neurologist July 15. I hate to wait but I have certainly waited for a lonnnnng time for other things as so many of us have.

Loonymom, I will explore that testing kit. Thanks!

GJenson, I do take a beta blocker and tried to increase it with dr. Knowledge before but my heart rate was going too low. I do believe it helped the surges but I was so tired! P.s. let us know about Mayo please and God Speed! My rheumatologist appt. was rescheduled for 10 days from now because the doc was ill. I will keep everyone informed.

DeGenesis, I will practice the techniques of team building. I am an awesome advocate for others,....stumble around for my own care.

[SarahA33]

Raisin,

I also am on propanalol. I great deal of it actually.. .. (Has to be short acting version, not LA) The propanalol doesn't do much for the BP, but taken w/ other meds it lowers my HR. Midodrine & Ativan.

I also take clonidine.. my doses are played with so frequently. I can't be off of it because my surges are unbearable, and it does help my BP now. I've been on it for years. now my body can quickly become pretty "dose dependent" on it and If I try to lower the doses too much, too quickly, I get rebound hypertension. Anyway - right now the doses are 0.2 4x per day & PRN when my systolic rises above 180.

I'm on Verapamil as well, it's a BP med that's a calcium channel blocker. I was put on it for the Superventricular tachycardia and it helps with my Raynoids. 240mg throughout the day. Best of luck! -Sarah

[DeGenesis]

Raisin,

I also am on propanalol. I great deal of it actually.. 480mg total throughout the day. (Has to be short acting version, not LA) The propanalol doesn't do much for the BP, but taken w/ other meds it lowers my HR. Midodrine & Ativan.

I also take clonidine.. my doses are played with so frequently. I can't be off of it because my surges are unbearable, and it does help my BP now. I've been on it for years. In the beginning it didnt lower the pressures, now my body can quickly become pretty "dose dependent" on it and If I try to lower the doses too much, too quickly, I get rebound hypertension. Anyway - right now the doses are 0.2 4x per day & PRN when my systolic rises above 180.

I'm on Verapamil as well, it's a BP med that's a calcium channel blocker. I was put on it for the Superventricular tachycardia and it helps with my Raynoids. 240mg throughout the day. Best of luck! -Sarah

Have you tried diltiazem? It is also a calcium channel blocker and is used for supraventricular tachycardia.

Verapamil is supposed to be more selective for cardiac muscle but this study found that it caused venous pooling in supine and head-up positions, while diltiazem did not.

I have not tried any CCB, but I've always been interested since they lower heart rate without lowering renin and therefore total body blood volume. Beta blockers do that. CCBs can still cause redistributive hypovolemia due to blood pooling, but not diltiazem, apparently. I imagine amlodipine would be the worst. As usual, YMMV.

Edit: Here is the study: http://www.ncbi.nlm.nih.gov/pubmed/8806974

[SarahA33]

Degenesis,

I was on amlodipine and was allergic to it.. I developed burns on my face. it was awful. I looked like a monster. I wasn't on it long enough to know if it would have helped or hurt.

The Raynoids is certainly worsened by the midodrine and propanalol. The verapamil was given for svt and helped with the raynoids. You know the drill.. add another med to fix the one given before! Did that come out correctly? I'm not thinking very clearly at the moment.

Reading up on the article you provided now. My hypertension specialists never mentioned diltiazem.

[DeGenesis]

You know the drill.. add another med to fix the one given before!

All too well. In fact, I'm sure most here can identify with that experience.

[gjensen]

I appreciate this exchange. I get runs of SVTs, and they are no fun. Fortunately, I get them in clusters with breaks in between. I will have a week of them, and a month without them. I do not seam to tolerate beta blockers very well.

[Raisin]

Thanks so much SarahA33. My surges are intolerable for me as well currently. My next neurology appt. can't come quick enough! I wouldn't be surprised if I don't just run in and quickly yell out,..."Clonadine pleeeease! " lol

Don't worry DeGenesis.....I won't really do that. I will be cool. Lol

[SarahA33]

Raisin,

I completely understand the "panicy" (I made up a word) and "anxiety" feeling. It's awful. I know many others suffer from this feeling as well-- because of the surges, we have absolutely no control over it. With that being said, I've tried to describe it to others as a feeling of a burning, flushing feeling throughout my body and just standing up sometimes feels like I'm running a marathon and unable to catch my breath, and on top of that - the feeling of falling backwards or the room starting to suddenly spin kicks into overdrive. Still, words don't give all that much justice and it seems like its almost impossible for people in my life to understand. Except for those on this forum. I hope your upcoming appt with your neuro goes well for you! And you wouldnt be the first begging for a pots med, lol.

Gjenson,

I wasn't aware that you had SVT. Sorry to hear of that.. I rarely get it anymore since I was given the Verapamil. It's worked very, very well for the SVT and I haven't had to increase my dose since I was put on it months ago. Hopefully your's stays put and continues to be somewhat managable for you

[bellgirl]

My PCP ordered my clonidine for me, because my ANS doctor says she doesn't do hypertensive meds, if you can't wait for your neurology appointment, Raisin. When is it? I wish my neurologist was more knowledgeable about dysautonomia. Does anyone have some good articles to share?

[SarahA33]

Hi Bellgirl,

What type of articles are you specifically looking for? I have quite a few. Are you looking for hypertensive medications and dysautonomia mainly or just general ans?

-Sarah

[Raisin]

Thanks Bellgirl!

Thanks Sarah A33!

My pots doc at Cleve. Clinic said there are "other meds" but he said he hesitated to put me on anything due to my being 48 years old. He said some are steroids which would not be good for me for some reason. I do take midodrine through my current neurologist but I am switching neurologists. Therefore, my appt is July 15 . I think my pcp wants to stay out of the pots realm as he doesn't want to step on toes. I will wait for the 15th as I have certainly been dealing with the adrenaline-type surges for a loooooong time.

Sarah, I have had the out of breath marathon type feeling. My midodrine increase has helped that a great deal. I am learning through this great Dinet.org that my symptoms are physiological and not in my head. Dizziness for me has been a product of blood pooling for me as well.

To be honest, I realize now that my "true" anxiety is now linked to my doctors appts. As I freak that someone will not take me seriously (again) or make a rude comment like "Boy, have you had alot of tests! " with a scowl. THAT is anxiety producing. It is a battle and I shall plod forward with prayer!

[blueskies]

Thanks Sarah

You explained the 'anxiety' very well. I have similar experiences. I'm exhausted. Also Sarah, nearly 4 years ago I experienced my face going red and the skin lifting in places and peeling. It was gross. Not sure is it was the same sort of burning you were talking about but I looked like I'd been badly sunburned on the face and then it peeled. We may have 'talked' about this before. My memory is reallly bad now. Neither my doctor or I could be sure what caused it but the large dose of magnesium sulfate I'd taken to get my bowels to work was probably the most likely candidate. I have not taken it since. I have experienced further skin peeling but not all over my face. The times it's happened since, has only been in one or two small areas. Knock on wood. But my skin was never the same in places. I have developed rosacea --that's what they are calling it -- from the repetitive skinflushing and drynessmade worse by having Erythromelalgia. However, I'm not convinced it is rosacea because my skin responds to cortisone cream used sparingly. It does not respond to the rosacea cream I was prescribed.

Good discussion everyone,

I've been reading this post with great interest. I see my pots doctor in August (I also have erythromelalgia (EM)which he also diagnosed) and I've had to acknowledge that the past 3 years have seen me slip backwards with POTS and the EM is getting worse and am going to ask him about clonidine. I was restarted on telmisartin last week because my bp was consistently reading high each time my gp took it. I get severe migraines and my bp will go up even higher with them. I became very concerned that as I was experiencing high bp readings (without migraine) that should I experience very painful level migraine my bp reading would reach dangerous levels. I did not want to have a stroke during a migraine. My gp agreed with me and I'm going to stay on termisartin at least until I see my pots doc in august.

blue

[gjensen]

The EP @ Mayo just prescribed me a calcium channel blocker for the SVTs. He did not like the Clonidine. This is with the understanding that his mindset was the arrhythmias, and OI. That is what I was seeing him for. Nothing else. We never even discussed all that goes on with me.

I have found the cardiologists often do not get the Clonidine(though my prescription came from a cardiologist). I have seen more acceptance from the neurologists that have a better view of the big picture and all that it involves.