What Medications Have Helped Control High Bp And Surges

[bustersacc11]

Hello Everyone!

Been sick for 5 years now. When I asked about the type of dysautonomia I have, the responses range from SNS is on the exaggerated side, to hyperadrenergic, to psuedopheochromocytoma, along with slow heart rates. Basically, high BP and low heart rates with adrenaline surge (BP/HR spikes). High NE levels upon standing.

Treat the slow heart rates I had a PM placed. Demand rate at 60bpm. Did not get the results I was hoping for. Little symptom improvement. Also, I have been on Methyldopa 250mg BID for 4 years and it did control the surges and maintain normal BP’s. However, the side effects are awful and really hasn’t improved the quality of my life. Recently my cardiologist and neurologist experimented with Toprol 12.5mg QD (off Methyldopa) this past Fall to see if it would help but unfortunately it did not work and made me worse. But it kept BP regulated and no surges.

I tried coming off everything this winter to see what happens. BAM! Right back to where I was 5 years ago..

• Increase intensity with heart beats. Intense pounding.
• Adrenaline overdrive. Couldn’t sleep more than 2-3 hours per night
• Jittery, and shaky
• BP started to increase right back to where I was before Aldomet (140-150/90). Intense adrenaline surges and BP/HR spikes 170/100 & HR 90-100’s were back
• At times lightheadedness more intense

Back in ED r/t hypertensive crisis and back on Methyldopa the past couple of months. Just so tired of the same symptoms everyday.

• Lightheadedness and dizzy sitting and standing. Tired and Fatigued.
• Heart pounding (not tachycardic). Intense heart beats with no relief.
• Poor sleep. BP spikes off and on during the night with intense chest pounding.
• Slow heart rate. Won’t increase appropriately with activity (little or no variability)
• No tolerance for activity (every time I try an exercise routine, I fail miserably). Fatigued / tired
• Chest pain at times

Now, I am in a bit of a quandary. Cardiologist is willing to experiment with other BP meds. However, autonomic Dr. says stay on Methyldopa and added Inderal 10-20mg PRN for the chest pounding and stressors for adrenaline surges. It is not PRN for me because I have those symptoms everyday. So, I have tried to add the Inderal the past 3 weeks off and on at 5mg QD and can barely get out of bed. Nobody believes me. The combo of both just knocks me out. Autonomic Dr said there is something to be said about the Methyldopa controlling my surges so stay on it and doesn’t know if my brain will every get used to the two meds and if my fatigue will improve. Continue with meds. Maybe its false hope or an unrealistic goal but something tells me that there is something out there that can help me I just haven't found the right combo or single drug.

I am asking for those out there what medications have you tried to help suppress those adrenaline surges and high BP. I understand everyone is different, has different types, and like everyone who needs meds to treat this awful syndrome you want to feel better with minimal side effects. Any input would be appreciated!

[E246]

Antidepressants - I haven't tried them but they are on my list from the cardio.

I have similar spiking BP but low HR. I am still trying to get it under control too.

I have tried Fludrocortosne which should increase BP but seemed to calm my system down.

Hope this helps.

[corina]

Hi Bustersacc, welcome at the forum! Can't really answer your question (I'm not a hyper sub type) but I'm sure others can!

[Guest Alex]

Not hyper POTS either, but I remember reading about clonidine on this forum and being used to control BP spikes with quite some success. Beta blockers are the typical meds for hypertension but I see you're already on it and experiencing side effects from it ...sorry it might take a while for you to get used to betas though - fwiw I've been on betas since July of 2011 and I'm still adjusting to their side effects

Best,

Alex

[issie]

I have the same type of symptoms. I used clonidine for awhile and found that it balanced out the extremes in low and high. It did however make me really tired - but, it was worth it to have things more level. I came off it after a few months and things remained more level.

Have you checked into MCAS (mast cell activation syndrome). What you are saying ---reminds me of me. I have this and addressing this issue has been a BIG help. You can look back on some of the threads on this. Do a search and it will pull up a lot about it. GastroCrom has been a big help along with Allegra and Zantac. If there is a mast cell issue - beta blockers make us worse. It causes a degranulation and then we are worse off. If that's the case, we can use Clonidine or Guiafacine. I could not use the Guiafacine - but, could use 1/4 of a clonidine.

Issie

[peregrine]

Clonidine and I are major friends for exactly those reasons - it makes my BP somewhat more steady (it was high again when I hit my head and was in the ER, but that's hardly surprising - I *want* my body to react to that kind of stressor, just not everything else!), definitely decreases adrenaline surges/pounding heartbeat/sweat (I can wear long sleeves again!). After taking it for a few days I suddenly realized how much less fatigue I had (despite being sleepier - hilarious) and how much less I was reacting to everything outside my body (pre-clonidine I would start and have an adrenaline hit from something like a bird flying nearby, now I don't). It does make me more fatigued (I get sleep attacks kind of like narcolepsy) and I have some tremor with it, but for me it's definitely a win. I found a beta blocker helped with my lightheadedness and standing tolerance and tachycardia, but not with the adrenaline issues, which the clonidine has been great for.