Clonidine If I Don't Have High Blood Pressure?

[DeGenesis]

I had no trouble getting my PCP to prescribe clonidine. It has many off-label uses such as migraine prevention, treatment of ADHD, PTSD, anxiety, insomnia, agitation, akathisia resulting from psychiatric drugs, etc. It is not addictive or habit-forming, although if you come off of it quickly, you can experience rebound hypertension.

Make sure your doctor does not think you are saying clonazepam.

I would never advise anyone to lie about what drugs they take, as that could result in you being prescribed a drug that could worsen one of your conditions, or precipitate a serious drug-drug interation. This requires a thorough understanding of drug metabolism and liver enzymes, and even doctors get it wrong much more often than you might expect. I keep a list of all the drugs I take in my wallet for this very reason.

Unfortunately, a prescription for an SSRI or a benzodiazepine, for example, can easily cause a doctor to attribute all of your symptoms to anxiety or depression.

Tread carefully, and if a doctor asks about a certain drug you are taking, an SSRI for example, you could say that it increases the standing vasoconstrictive reflex, which is true. You are prescribed a benzodiazepine? You could say that it reduces the tremor induced by your POTS. A neuroleptic? You could say that it helps you sleep.

I'm not sure where all that came from, but I understand the fustration of having all of your syptoms being attributed to anxiety or depression.

[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.

I had no trouble getting my PCP to prescribe clonidine. It has many off-label uses such as migraine prevention, treatment of ADHD, PTSD, anxiety, insomnia, agitation, akathisia resulting from psychiatric drugs, etc. It is not addictive or habit-forming, although if you come off of it quickly, you can experience rebound hypertension.

Make sure your doctor does not think you are saying clonazepam.

I already have it. I have been taking it for 11 months. I only mentioned that the cardiologists that I have dealt with doubted it to be helpful, based on their limited perspective. I am not saying that they are all like that, but that it was my experience.

[DeGenesis]

Something weird is happening with quotes. Your response is in your quote, and I can't quote you. Maybe it's because I was editing my post while you quoted me.

[SarahA33]

Jgenson and Degenesis.. here's my thoughts on Clonidine Rx's..

I agree that it's much easier for a neuro to look at clonidine as a long term medication for treatment to lower NE levels. Also, like Degenesis mentioned, it's more commonly known by neuro's to treat migraines/certain types of vascular headaches...I think they are familiar with it working on parts of the central nervous system as well as having to monitor their patients more closely if they are also taking certain anti-depressants or Parkinson's Medications as they could potentially interact. When it comes to cardiologists, I feel they tend to look at it from a differing approach I think... blood pressure control and not a NE blocker. I've been told by 2 very well known cardiologists that unless you are using the Catapress Patch short term, that Clonidine is more of a last resort BP medication as a daily regimen. One said "It's like Nitro for heart attacks and should be better off used as a PRN/Hypertensive Crisis option". Also, a family member had OB/GYN problems a few months back and was Rx'ed a very low dose clonidine for post menopausal hot flashes. This medication has always interested me a great deal. I'm kind of a nerd, lol. I'm curious as to how you all view my thoughts on it -- agreements or disagreements requested, please!

Real quick -- when discussing certain medications used for off-label purposes with new doctors, I have to explain to each new physician I see that Ativan, (Lorazepam) is not being used to control an anxiety disorder, but rather it's used to effectively lower my heart rate. It's incredibly frustrating (and potentially can be a setback for your care) when a doctor only sees the medication and doesn't see the patient, if you know what I'm trying to say. Unfortunately, there are medical staff out there that will refuse to not look outside of the box. Phew. Sorry about the rant!

[SarahA33]

Hi, Blue,

Sorry that you were in the same boat with the burn like situation. It was horrible.. It started with a hot/flushing feeling on cheeks and forehead (kind of like what you described actually), and then turned into what looked like brush burns on my cheeks, then came the forehead and scalp near my hairline. I saw my PCP at the time who referred me to a dermatologist who told me I had impetigo. While being treated for that, the brush burns started actually turning somewhat blistering looking and then quickly turned open (broken) sore-like burns. I had asked the dermatologist if any of the med's I was on could be causing that and he assured me that they weren't, and since I had been around young children at the time I had just picked up the impetigo. I started researching on my own as I was getting worse with the meds the derm had put me on and called my hypertension specialist. The moment he saw me later that day he said those are amlodipine burns. He said a common side effect of Amlodipine is a tingly/hot feeling on your face, but for whatever reason, I had a super intense hyper-response. I ended up having to be treated by a wound healing specialist. I still have some minor pinkish spots that only I notice, that was about 3 1/2 years ago I believe.

Thanks for the heads up about the magnesium loading. Interestingly enough, I'm going to be adding IV magnesium drips to my migraine treatments. Yikes.

Have you had an ANA blood test to rule out any auto-immune issues? I flush so frequentlly also... I'll get blotchy, sometimes bright red or even purple-ish colors. My face and chest ("trunk") turns bright red, sometimes purple blotches and I flush and get so hot. This is weird, but my ears also turn so red and hot it's almost alarming to me if I look at it. I've been looked at for Mast Cell Activation... have you been screened?

[SarahA33]

Raisin -- I completely understand the White Coat Anxiety. I get it, too..(with new doc's I also get White Coat HTN too!) It's so hard not to when you've seen so many doctors and have gone through so much. It starts when a new nurse takes my vitals and thinks her machine is broken, lol. Then, the doctor comes in and having to go through my entire history is almost like re-living it to a certain extent. It's quite traumatic for me actually, and a few others that I've talked to on dinet regarding this topic have the same feelings. It took such a long time and was a terribly scary and turbulant path until I finally got diagnosed.

[DeGenesis]

Real quick -- when discussing certain medications used for off-label purposes with new doctors, I have to explain to each new physician I see that Ativan, (Lorazepam) is not being used to control an anxiety disorder, but rather it's used to effectively lower my heart rate

This may help.

Lorazepam is a benzodiazepine, as you probably know. Most doctors think that benzodiazepines work only in the brain. This is not true. There is the benzodiazepine site found on GABA-A receptors in the brain, which produce their psychoactive actions, but other kinds of benzodiazepine receptors exist.

There are the so-called "peripheral benzodiazepine receptors" found throughout the body. They have been given new names, "translocator protein", and now the "mitochondrial benzodiazepine receptor".

All benzodiazepines, including popular ones such as lorazepam (Ativan), clonazepam (Klonopin), diazepam (Valium), and alprazolam (Xanax), bind to peripheral benzodiazepine receptors.

Peripheral benzodiazepine receptors are involved in a huge number of physiological processes. A quick glance at the Wikipedia page for "translocator protein", which is well referenced, will show this.

Importantly, the peripheral benzodiazepine receptor is found in the mitochondria of heart muscle cells, and regulates both the force with which the heart contracts, and the rate at which it beats.

This paper explains. Read it carefully. A smart doctor will clue-in immediately. I am planning on buying the full text at some point, since I do take benzodiazepines and their effect on POTS is quite obvious.

"Roles of mitochondrial benzodiazepine receptor in the heart."

http://www.ncbi.nlm.nih.gov/pubmed/21459278

Only because you said you're a nerd.

[DeGenesis]

Don't we all wish that more doctors would keep a "beginner's mind".

https://en.wikipedia.org/wiki/Shoshin

[SarahA33]

Great Post Dengenesis.. Do you not sleep either? Lol

I was using Ativan as an example of just one medication that is "controversial" with some doctors. (Is that the right word do you think?) As you're aware, Valium is another med that is perceived to be used for anxiety/panic disorder, but in my case it was given for two very different reasons. 1) Since Ativan is shorter acting, the epileptologist was concerned that I could trigger my seizure disorder and possibly cause a withdrawl seizure towards the end of the Ativan dose wearing off, and since Valium is longer acting - it was prescribed as an pre-cautionary measure to avoid that. 2) The muscle aches and stiffness due to the convulsions. My muscles, my entire body, feels like I've been hit by a truck due to the clenching and convulsing..The valium helps pre and post episodes very suttley. .

[DeGenesis]

Thank you.

I do sleep, fortunately. In fact, I have an appointment (not medically related) tomorrow morning (Edit: This morning. Lol). Should be fun. I have an odd sleep schedule. Some might call it "non-24-hour sleep-wake disorder", but whatever. They say a lot of things. Mostly I sleep 4 hours in and around obligations. I used to have a normal sleep schedule, but when I went to sleep at 10 or 11 pm, I would wake up 3 hours later. I've tried all sorts of things to fix it, including staying up an entire night and an entire day, but then I only got 3 hours sleep that night. So now I take sleep whenever I get it.

Yeah lorazepam has to be taken 3 times a day to avoid interdose withdrawal, but even then it is iffy. Valium (diazepam) is great for a number of reasons:

1) It is long-acting, as you say, due to its long half-life (20-100 hours).

2) It has several active metabolites that are commonly prescribed benzodiazepines, including temazepam and oxazepam.

3) Its most important active metabolite, desmethyldiazepam (also known as nordiazepam) has a staggeringly high half-life of 36-200 hours.

Too bad about the convulsions. I'm afraid I can't relate but the expectation of having a seizure, and not knowing when, would drive me nuts.

[blueskies]

Hi Sarah,

i took magnesium sulfate on a once a week basis 4 years to empty my bowels. I would have flares of erythromelagia that lasted three days after each dose. The whole process struck me as pretty medieval. However, on the day each week that I did take the mag sulfate I never experienced migraine. I got migraines nearly every day (still would but low dose opiates help quite a bit - not total, but best result from a med to treat migraines yet, in my case).

I was struck, at the time, how I did not get a migraine on the days I used mag sulfate although the dehydration caused by it (like doing a colon prep once a week) often caused me bad migraine on the next day or two. At any rate, I noticed the connection of mag sulfate and no migraine (on the day) before I began to read about intravenous mag sulfate as an effective abortive migraine treatment. So if I had not developed problems with mag sulfate I would definitely have tried it by now 4 migraine?

I am pretty sure I have mas, given my ever growing allergies and in tolerances to things. I have experienced both immune and non immune anaphylaxis, milder allergic responses and have multiple chemical/food/med in tolerances that generally cause painful flares of erythromelagia. I,myself hoping to get my pots/erythromelagia doc to speak with my allergist ( they know each other well) to define exactly how many I have problems going on and hopefully end up with a treatment plan that is more effective than having no real plan, has been.

typed from my new tablet so I'm sure there is a lot of grammatical errors. My apologies.

blue

[Raisin]

Hi Sarah! Yes, I go to CC currently. I see a Dr. Jaeger who I am happy with so far. I am grateful to my current neurologist for finding my Pots but we seem to be on different pages currently so I am scheduled to see a Dr. shields who is part of the Dysautonomia clinic there. But, yes! I would like that Uh docs name. What the heck? I am experiencing alot of leg ataxia a d really need guidance.

Also, is HTN hypertension? I don't know! Lol

I am grateful to live near both hospitals. Thanks again Sarah!

[bellgirl]

I went to a cardiologist for a scan because of shortness of breath, that was happening way before being put on clonidine, and she said she didn't like it. When I asked her why, she said it's because it affects the CNS in older people (implying I was old); I'm 57, btw. I told her that I was put on it for adrenaline surges, and she had no other response about it. She also asked me if I had ever been treated for anorexia, because my BMI was 16.62, which is below normal slightly, in which I answered, "NO", I've always been a small person, but I had lost weight, because I was sick. She wasn't even my doctor, and I was referred to her for my test only. She had no right to ask me these questions. Yes, I had arrhythmias; so does everyone with dysautonomia/MVP. She also said there was no treatment for dysautonomia, so by this time, I was really upset. I told her that my life has improved dramatically since my Autonomic Nervous System Specialist has been treating me. I couldn't function to drive, because I was so dizzy with vertigo, and I had insomnia, too!! Then she said she had heard of the Center in Birmingham. They did a scan with my undergarment on, and did it over again because of shadowing with the same foundation. I never received a bill for this scan or my 2 doctor's visits!! She said that the scan was normal and sent the results to both doctor's that I requested. I still don't know whether the test was normal or not, because I had something in the way, or there really was a blockage. My ANS doctor told me to talk with my PCP about clonidine, when I mentioned the medication all on my own after doing my own research, to my PCP she put me on .1mg twice a day and lowered my losartan to half. My B/P was very low, so I skipped a dose and I decreased it to half twice a day, and it works very well for me. I ran into my PCP at the store and told her what I did and she was fine with it. I have Pure Autonomic Failure, but I believe I'm more Hyperadenergenic.

[Raisin]

Bellgirl, I feel for you as you describe that appt. ...sooooooo frustrating. I am 48 so I understand the "old" thing. I am feeling now that perhaps I am more hyperadrenergic and I am hopeful that the Clonadine may be a lifeline for me. And if it does affect the CNS, more power to it!

[SarahA33]

--

[bellgirl]

For those with migraines or seizures....I have a friend with horrible migraines. She has a seizure disorder and also has a magnetic pacer for the brain to stop the seizures, because her meds were causing her a lot of side effects and she also was on a lot of them, and they were trying to decrease the amount she took and maybe take her off some, as well. She now receives botox injections in the base of her neck for her migraines, and they are less severe and less frequent, so she is able to have a life again. She's been taken off all her seizure meds but one. She is also on a Beta Blocker for migraines, too. She goes to Dr. Kevin Cole, a neurologist in Hattiesburg, Mississippi. I believe she may be having another med injected in the base of her neck, too. I'll ask her...

[bellgirl]

She takes Depakote, Propanolol, and Lacticane nerve block in her neck, if the preventatives don't work...look above, for all those with migraines or seizures.

[blueskies]

Hi Sarah,

Yep, I've tried it all. Sometimes I wonder if trying all those migraine preventative and abortive meds didn't set off my chemical sensitivity problem. It happened around the same time. At the moment my migraine specialist has nothing new to offer me either.

blue

[blueskies]

Hi Bellgirl,

Botox is one med I will try again. I had no success with it on my first go -- I was sent to a neurologist who specializes in giving botox to migraineurs. But I am going to try it again at one point. I read somewhere that botox is now partially covered by our public health system for migraines and other things. It was a very expensive option when I tried it -- no govt. approval, then. I'm in Australia. But because it's not such an expensive option anymore, I thought I'd give it a second try to see what happens. My migraines have morphed in the past couple of years -- gone up in pain level at times and I often experience different type of migraine pain -- so it might be worth the second go. I'd love to stop the opiates. I tried to stop recently to see what would happen and ended up with the worst migraine pain I'd ever experienced.

I'm getting the 'old' treatment at times too. I'm 58 and I'm not kidding myself - I'm older. But there seems to be an inherent bias sometimes against post-menopausal women in many areas of medicine that I had not experienced when I was younger. It is like I'm not supposed to expect to feel well anymore. I'm not being unreasonable. I don't expect to feel great or well or the time. I'd just like to feel it some of the time. And that's aiming low, I think.

blue

[looneymom]

DeGensis

That was an interesting post. I went back to look at some of my son's earlier medications. The early medications that he was on were from the benzodiazepine family. They were prescribed to help keep his vocal tic under control but his vocal tic kept getting worse. He was put on Intuniv and this really settled the vocal tics down. Most days we never hear them at all. He has been on Intuniv for 2 years and last year he was put on the extended release clonidine to help with sleep and pain issues. I am curious about the mitochondrial part and will do some more research. Thanks for posting this information. It seems that my son may not tolerate medications from the benzodiazepine family.

[SarahA33]

Bellgirl and Blue,

I've tried a lot of treatments for migraine, Botox (but like yourself Blue, I would try it again.) It didn't help with the frequency of them but it did help with the intensity of them at times. It all depends on a lot of things -- stress (HUGE stresser),weather- The heat just bothers me, I get weak, confused, dizzy. I hate it.

As for past treatments for migraine: steroid injections in the neck (im assumining the same one belle mentioned cause i cant remember the name, shocking.)

Trigger point through the forehad, cheekbones,tip of the neck down to the end of my back , botox, trigemenal nerve blocks, occiptal nerve blocks. Not much left me.

[SarahA33]

DeGenesis and Rachel,

That was the best article. So easy to read and understand. .

[looneymom]

Hi Sara

Are you seeing any improvement? This sound like a mess. Hope you are finally getting the help you need. Tyler does not do well with heat either.

I think I am going to get Tyler better. His doctor will be calling on Wednesday. These autoimmune antibodies are positive in Tyler. IVIG treatments do not seem to be helping. We are wanting to try PEX if insurance will approve it. It seems to have brought relief to those 4 young adults in that research study.

I had no idea that OCD could be associated with autoimmune antibodies.

I will keep posting articles as I find them.

[SarahA33]

Rachel,

Forigve me, but what is PEX? I used to work for an insurance co. and they offer somethign called peer-to-peer. It's where your doctor calls a physician from your insurance company and explains how medically necessary it is. My old neuro used to do that for all of of my testing and it all got approved.. i mean like same day mri's

Hopefuly your insurance will offer something of the sort. I have Blue Cross/Blue Cross

[looneymom]

PEX is plasma exchange. I have read about the peer to peer review. I suspect that our doctor is already doing this on our behalf. Hang tough it's just got to get better.