Archive for June, 2011

POTS Negative, Possible Other OI – Postural High Blood Pressure

So my Lovely GP administered a proper POTS test in her office as promised for me at the end of her surgery so we had enough time. My ECG hadn’t shown anything abnormal, other than having a very high heart rate (about 117-122bpm resting sitting down).

I was careful not to over exert in the morning before we arrived so that my resting heart rate wouldn’t be too bonkers to begin with and the increase all the more dramatic.

Except when we did the test my heart rate did not spike as dramatically as I had thought it would. It raised from a resting rate of around 107bpm to 116bpm standing after a few minutes and then there it stayed for the next 10 minutes. My heart rate was consistently high, but not high enough or a large enough increase in bpm to confirm a POTS diagnosis.

11oct2007 swirly headWhat did happen however was that my blood pressure climbed from lying resting to standing. And it continued to climb over the next 15 minutes. It’s a little high when resting for my age but once I was standing it was a cause for concern and further investigation. My GP took bloods there and then, then requested they be repeated once the results came in.

I’m going to have a 24 hour blood pressure monitor from the surgery next week when they’ll also take the repeat bloods for testing.  I’m trying to work out a timetable for the day so that I can get a variety of measurements as it goes off every 30 minutes during the day and every hour while you sleep.  So I’ll need to have some reading sitting relaxed and then for others begin standing or moving around a few minutes before the monitor goes off.  Otherwise I’ll only show fairly normal readings for the sitting down and sleeping parts, when it’s being upright that seems to make it climb.

I repeated the POTS test using my home blood pressure monitor the day after I saw my doctor (BP monitor very similar to the doctors) and I pretty much replicated the results of the previous day.  My heart rate did climb bit only to around 115bpm over 10 minutes of standing still, while my blood pressure rose and then after 3 minutes of sitting back down my blood pressure dipped.

RESTING  Start of test:   BP 128/96, Pulse 96

STANDING 3 mins:          BP 130/92, Pulse 106

STANDING 10 mins:       BP 132/95, Pulse 115

RESTING 3 mins:              BP 112/84, Pulse 90

Out of interest one weary evening I measured my blood pressure having climbed the stairs at bedtime. I felt shattered, my heart was thumping inmy chest (which it doesn’t always do when my HR is fast), I felt headachey and light headed. When I measured my pulse it was 124bpm but my blood pressure was up to 137/99 compared to 87bpm and 127/87 sitting on the sofa.

Postural Hypertension or Orthostotic Hypertension (high blood pressure on standing up) does exist but is even less well known that Postural Hypotension (low blood pressure on standing up) which is not particularly well known itself!

Unless my blood tests reveal an possible underlying cause, or perhaps even if they do, a referral to a cardiologist is likely the next step. Unfortunately my Lovely GP doesn’t know much about local cardiologists so doesn’t have someone lovely in mind she can send me to so it might be a bit of pot luck. If the cause is OI related will I find a cardiologist who knows about it or is willing to be open minded?

Dr Bell defines 5 kinds of Orthostotic Intolerance

There are five separate abnormalities than can occur during quiet standing:

1. Orthostatic systolic hypotension where the upper number (systolic) blood pressure drops. The normal person will not drop BP more than 20 mmHg on standing up. One patient I follow with CFS had a normal BP lying down (100/60) but it fell to 60/0 on standing. No wonder she was unable to stand up – a blood pressure that low is really unable to circulate blood to the brain. In any ICU [intensive care unit] they would panic seeing a BP like that. And she was turned down for disability because she probably was a hypochondriac.

2. POTS stands for postural orthostatic tachycardia syndrome. A healthy person will not change their heart rate standing up for an hour. In a person with POTS, the heart rate increases 28 beats per minute (bpm). Some experts say the heart rate should exceed 120 bpm to have POTS. But either way, this increase occurs frequently in CFS. I think the increase in heart rate is linked to the decrease in blood volume. (Orthostatic intolerance has been called Idiopathic hypovolemia in the past.)

3. Orthostatic narrowing of the pulse pressure. The pulse pressure is the difference between the lower number of the BP from the higher number. For example, a normal person with a BP of 100/60 would have a pulse pressure of 40. It is actually the difference between the upper and lower number of the BP that circulates blood. If the pulse pressure drops below 18, it is abnormal and blood would not circulate in the brain well. We routinely see in our patients with CFS blood pressures of 90/80, thus a pulse pressure of 10. The current record holder is a young woman with CFS whose pulse pressure fell to 6 mmHg before she passed out.

4. Orthostatic diastolic hypertension. The lower number of the BP often reflects the systemic resistance, and while standing many persons with OI and CFS will raise their lower BP number (diastolic) in an attempt to push blood up to the brain. Sometimes this is dramatic. One patient being followed with CFS had a low blood volume, about 60% of normal. While lying down, his BP was 140/80. After standing, his BP rose to 210/140 before we made him lie down. His pulse went up to 140 bpm. He felt rotten but refused to sit down by himself…

5. Orthostatic diastolic hypotension. This represents a fall in the lower number of the BP, and seems to be the least frequent abnormality in patients with CFS I have tested.

My variations in BP are not as dramatic as the patient Dr Bell talks about but they’re enough to give me concerns. Especially with an illness where many experts already believe that the heart is under a lot of strain.

20080224_selfIt might account for why since I’ve been taking LDN I’ve felt I have more energy but haven’t been able to maximise on that – probably because everytime I am on my feet for longer than a few minutes my BP is rising and my heart rate is too fast (I’ve measured my HR on the go up to 160bpm just doing very light physical activity like climbing a few steps slowly).

Of course the high heart rate could be as my Lovely GP suggests due to enforced sedentary lifestyle and a bit of deconditioning but it doesn’t feel like it to me. I’ve stayed relatively mobile and over the last year tried to gently increase activity but keep hitting brick walls that I feel are down to tachycardia.  I can’t prove it because I can’t exercise my way past my high HR :/ And of course the high BP could have an underlying cause not yet diagnosed but the postural/OI thing is somewhat intriguing.

Hopefully the 24 hour monitor will demonstrate some juicy results.

This is a good research paper on postural high blood pressure (one of the few I’ve found) in PDF about Orthostatic hypertension: when pressor reflexes overcompensate by Joshua Fessel and David Robertson – or here is a web page version of the article

Since I’ve not presented in the clincial test with classic POTS  I’ve sometimes felt in danger of other ME/CFS people saying I haven’t got real ME because I don’t have POTS or a drop in blood pressure like Orthostotic Hypoptension. These are classic signs that typically accompany ME/CFS. But Dr Bell’s article re-assures me that there are different forms of OI and a rise in BP is as valid in an ANS autonomic sense as a drop in BP or big HR increase like POTS.  Standing up sure can have some odd effects on ME/CFS people.

Alternative Low Dose Anti-Depressants to Amitriptyline

138/365 amitriptyline 30mg

I currently take low dose of Amitriptyline (30mg) for pain and migraine relief.  I’ve been looking at alternative low dose anti-depressants for use in ME/CFS to help with pain and if possible aid sleep also.

I apologise for lack of links to evidence for my findings. I compiled this document for personal use as I researched but it struck me it may be useful for other people, particulalry with ME/CFS, to see the list too. Where I found a tricyclic was not sedating or had a bad reputation heart wise I didn’t research it any further.

If I were to switch tricyclic I’d like to try Doxepin or Trimipramine. Doxepin is supposed to be effective for IBS. eczema, chronic pain and to aid sleep – all useful for me. Trimipramine is good for chronic pain and very effective at sedating without disrupting REM sleep.

Amitriptyline works well for me but I do have a fast heart rate. My GP does not think this is due to the amitriptyline as it’s such a low dose but I’ve heard from other ME/CFS people that even a 10mg dose can effect heart rate.

TRICYCLICS

Tricyclics like amitriptyline are sedating and good for pain. But side effects can include heart problems, although many doctors say this is not so on low doses but some patients (particularly ME/CFS patients sensitive to medications) say it does.

Tricyclics can interact with morphine, tramadol and antibiotics.

Amitriptyline is cheap and very commonly prescribed. Alternative tricyclics include:

  • Doxepin (Sinequan, Aponal, Adapine, Deptran, Sinquan)  Sedating so useful as an aid to sleep. Can be useful for IBS (lessen gut activity and secretions). Used for insomnia as Silenor. Good for chronic pain & tension headaches. Used for eczema. Helps with itching.  Used in fibromyalgia. The typical dose is 10-50mg daily.
  • Trimipramine (Surmontil, Rhotrimine, Stangyl) is the most sedating tricyclic. More effective sedation as aid for sleep than amitriptyline and it doesn’t suppress REM. Good for chronic pain. Typical dose is 5-75mg daily.
  • Duloxetine (Cymbalta, Ariclaim, Xeristar, Yentreve) sedating. Has been studied in use for ME/CFS and a study for FMS at 60mg study showed good results. Duloxetine is thought to enhance the nerve signals within the central nervous system that naturally inhibit pain (in diabetes feet, leg and hand pain). Might cause high blood pressure and OI problems. Can cause sexual dysfunction which can persist after treatment has stopped for months or years. 
  • Trazodone (Desyrel, Molipaxin, Trittico, Thombran, and Trialodine) (SARI) Is sedating so good to aid sleep. Typcially has less side effects than other tricyclics. Effective for sleep but less effective for pain. Sometimes taken in conjuction with sedating tricyclic like Nortriptyline.
  • Dothiepin (previously known as Prothiaden, Dosulepin) Sedating so could aid sleep but danger of long term toxicity to the heart
  • Imipramine (Sormontil, Antideprin, Deprimin, Deprinol, Depsonil, Dynaprin, Eupramin, Imipramil, Irmin, Janimine, Melipramin, Surplix, Tofranil) Is not sedating.
  • Nortriptyline (Pamelor, Allegron) Is not sedating but good for pain so can be effective combined with another sedating tricyclic.
  • Protriptyline (Vivactil) Is not sedating.
  • Clomipramine (Anafranil) Is not sedating. Can’t be combined with SSRI.
  • Despipramine (Norpramin, Pertofane) Not for patients with a family history of dysrhythmias.

New tricyclics which generally have less side effects but are more expensive:

  • Gamanil, Lomont (lofepramine) Is not sedating
  • Motipress (Nortriptyline + Phenothiazine)
  • Motival (nortriptyline + fluphenazine)
  • Triptafen (amitriptyline + phenothiazine)  Only tends to be prescribed short term.

SSRI’s

SSRI’s like Prozac are  not as effective for pain but do energise.  But this can be problematic with ME/CFS possibly due to abnormalities involving serotonin transmission. Dr Cheney urges against the use of SSRI’s and other stimulant medication as it effectively fries the brain and “taken over a period of 10 years or so, can lead to a loss of brain cells, causing neurodegenerative disorders” . But another study showed SSRI’s are effective in improving numbers of natural killer cells.

Sertraline (Zoloft) in some studies show major improvement in ME/CFS. Prozac, Zoloft and Paxil (paroxetine) have been shown in controlled, blinded studies to improve autonomic function.

Prozac, Zoloft and Paxil are most likely to suppress libido.

OTHER LOW DOSE ANTIDEPRESSANTS

Venlafaxine affects serotonin and noradradrenaline levels. It activates energy levels but may interfere with deep sleep. May be effective in increasing pain levels. May possibly reverse immunological disturbances involving natural killer cell activity but other studies have shown it has little benefit for ME/CFS.

Wellbutrin increases dopamine. It can be taken alone or with another antidepressant.

MAOIs raises levels of noradrenaline, dopamine and serotonin but need major dietary restrictions that can otherwise produce a potentially fatal reaction.

USEFUL LINKS

Sleep in CFS – Dr David Bell

Using Antidepressants to Treat Chronic Fatigue Syndrome – Dr Charles Lapp

Treating CFS Sleep Dysfunction – Sue Jackson

Trazodone in Chronic Fatigue Syndrome (ME/CFS) Treatment

Doxepin helps itching, why;?

Amitrityline – Mingraines (useful info about side effects even at low doses)

Amitriptyline – Netdoctor

SSRI and Stimulants: Frying the Brain – compiled from notes between Carol Sieverling & Dr Cheney 2000


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