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JoeKen
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CH and Blood Pressure
« on: Mar 17th, 2003, 2:52pm » |
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Hi folks,
Being newly diagnosed, never having heard of the condition before, despite a 50 year history of chronic headaches, I guess that I am going through lots of "why me, and how does it happen" thought processes that lots of you guys have gone through. If the following topic has been considered by others, please let me know, preferably politely.
I consulted my GP about 15 months ago when I began to get HAs like none I have ever suffered before and as part of his very brief consultation he checked my blood pressure. Finding it marginally high, bottom figure just over 100, he pursued this problem himself and referred me to a Consultant at the local hospital for the HAs.
Consequently I have been monitoring my BP at home and logging the results, not thinking that there might be any connection with the HAs. Only recently have I put the BP record alonside my HA pattern and begun to notice coincidences in which the HA pattern has been matched by very small changes in BP. I think that the changes are so small that our Medically qualified bretheren would dismiss them as insignificant, and I do not have enough data to claim that the coincidences could be more than just coincidences.
My school science studies suggest to me that if you increase the pressure in a closed fluid system, one effect may be distention of the walls of the system - isn't that one of the likely causes of CH?
Or am I re-inventing the wheel - any thoughts, you guys? ???
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Not sure I should be here, but it's as near as I'm going to get to finding out what is the correct name for my condition. Usually KIP 5 or below but last up to 16 hours and always one-sided, behind the eye, usually right but ocassionally left.
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amber
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Re: CH and Blood Pressure
« Reply #1 on: Mar 17th, 2003, 3:12pm » |
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Hey there and welcome
I'm relatively new to these bastards myself but I think it's more of a chicken and egg syndrome.
Pain causes high BP, there's no question about that. I know that since my ha's have started, my BP has been higher than it should be, and it really pisses me off. They prescribe BP medication (verapamil, for example, is a heart medication or was) to help with clusters. The bottom line is that I don't think that clusters are CAUSED by high BP but I think they are aggrivated by it, and I think that they CAUSE it.
Does that make any sense to you?
Amber
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Margi
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Re: CH and Blood Pressure
« Reply #2 on: Mar 17th, 2003, 3:22pm » |
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I have to agree with Amber on this - it really is the chicken and the egg thing. Does one cause the other? We don't know.
I know my husband's bottom number (is it diastolic or systolic, I'm never sure), is also elevated. I think THAT could be something significant - would be interesting to see how many other clusterheads have a high bottom number. I've taken his BP during an attack (which was VERY difficult for him to sit through) and both numbers were elevated, but I remember the bottom number being around 135. Scary stuff!  His normal resting BP is lower, of course, but the bottom number is always higher than normal.
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Re: CH and Blood Pressure
« Reply #3 on: Mar 17th, 2003, 5:43pm » |
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Hi Joe. I haven't tracked my BP closely enough to know, but I always thought that maybe my BP dropped before an attack. I thought that because I would yawn and sometimes get headrush (upon standing... but maybe it was the verapamil doing that also).
But here's another thing to think about. (Somebody correct me if I'm wrong). Vasoconstriction will actually cause a rise in blood pressure because there is the same blood flow through a narrower opening. So although a rise in blood pressure means that a greater force is being exerted on the walls of the vessel (as you correctly point out), it may not be caused by the blood expanding the vessel, but rather by the vessel squeezing in. Imitrex is a vasoconstrictor and can cause an elevated blood pressure.
Another thing to think about... perhaps right before a CH attack there are subtle changes in your body that maybe you don't consciously realize. Perhaps that added distress is causing a rise in blood pressure in preparation for doing battle with the CH Beast.
Your question is a very good one, and I don't know the answer.
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DeansGirl
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Re: CH and Blood Pressure
« Reply #4 on: Mar 17th, 2003, 6:48pm » |
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I have noticed my boyfriend's blood pressure elevated before, during, and after a headache attack. It runs about 140/78 normally. Before an attack, he goes up to 184/86 right away. I've never tried to take his bp during an attack.
What fascinates me and makes me want to find out more, is that when he's on prednisone and the pain of the headaches disappears, the elavated blood pressures episodes CONTINUE! Like clockwork, every 4 hours for the first day or so when we would normally anticipate a visit from the beast, his face would flush, he could feel the blood in his ears, and I'd take his bp. Elevated. Not only that, but his resting pulse would jump from 80 to 105 or more. Just sitting there.
Anybody else experience the other symptoms of CH without the pain when on prednisone? Especially the bp and pulse parts.
DeansGirl
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WendyHowe
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Re: CH and Blood Pressure
« Reply #5 on: Mar 17th, 2003, 6:50pm » |
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Hello JoeKen
All I know about BP and CH is that a substantial proportion of CH sufferers have low BP which rises, often dramatically during an attack. (probably the reasons people have given above) I certainly have naturally low BP that rises, but I often get very panicky during a CH. If my husband's BP can rise if the nurse is good looking, I'm sure ours can if we are in pain!
We are all looking for a reason. Keep looking for one for yourself, but one that applies to everyone is incredibly unlikely.The research team in the UK have found some interesting physiological commonalities between CH sufferers (hypothalamus enlargement), but no real other common factors (hence the very upset responses that happen when it is suggested that CH people are or were heavy drinkers which was an old theory)
Wish you luck and know what you are going through as I was only recently diagnosed and have been asking all the same questions!
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tanner
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Re: CH and Blood Pressure
« Reply #6 on: Mar 17th, 2003, 7:12pm » |
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wow joeken, nice to meet ya and an excellent question!
i have been paying close attention to my bp for the past month or so because good friends (the kind i let see me when i'm getting hit) and family have been noticing that i get flushed and my temp elevates during bad attacks.
i was driving past my gp's office a week ago when one started to escalate, i went in and asked lisa (the nurse) to please take my bp it was 130/90 which is high for me. she waited 10 minutes in which time the ha had gone from a kip5 to a solid kip 9 and my bp was 140/110 and she freaked.
i stayed there until she could get ahold of my neuro and his thought was that the pain was causing me to go into fight/flight mode which caused me to start dumping adrenalin pushing my bp up. this coupled with the fear factor (thinking that the grenade in there was finally going to blow) was giving me record highs. he also pretty much said what the ladies did "chicken/egg.
he ended up calling the lab where i am having some scans done on wed. and changed the times to one where i am normally getting slammed hoping to catch pictures of the event.
watch, with my luck it will be my first pf afternoon in 600 some days. 
should be interesting!!! tim
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Karla
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Re: CH and Blood Pressure
« Reply #7 on: Mar 18th, 2003, 5:48am » |
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I agree dealing with the pain causes the blood pressure to rise. My b.p. is normally 120/70. Perfect. However, when I am getting hit it will go to 158/110 or higher sometimes.
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JoeKen
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Re: CH and Blood Pressure
« Reply #8 on: Mar 18th, 2003, 3:16pm » |
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Hi all previous and new readers,
Another mini epic I am afraid, but it does seem to have got one or two of you thinking, so I will persist.
The sort of BP changes that I am talking about are very small, but more of that later. As my footnote indicates I don't think that I have got CH in the same sense that most of you guys have, but a Consultant Neurologist says that I have and who am I to argue.
My attacks began around 15 months ago, stopped after around 3 months, and resumed about 6 weeks ago. An attack can stike at any time of the day, morning or afternoon, and has twice woken (?) me at around 2.00am. A typical attack builds up to a peak after around 4 hours, stays at this level for anything up to 36 hours and then tails off over around 4 hours. The pain centres and other symptons are very much like the classical CH attack but probably peak at Kip factor 8 or so. (36 hours of Kip factor 10 would be intolerable and would probably result in permanent termination !!). I also have had epidsodic migraine attacks over most of my life and I can assure the reader that these are not migraines, no way!!
Until I read about shadow attacks I had not realised that I probably have them, but as they are a very pale shadow, and are present virtually every day, I just thought that it was part of 'getting old' - possibly not.
Most days I get a suggestion of an attack starting but thankfully it it usually doesn't, but I feel 'off' all my waking hours. Some days I get a totally PF day and the world is a wonderful place. Some days the attack develops and suicide has it's attractions.
To the point: -
I have been monitoring my BP on a weekly basis, as directed by my GP, at the same time on the same day each week, shortly after waking. I have been using an automatic device made by the same manufacturer that my GP uses and he has calibrated it with his 'mercury tube' and verified it's accuracy. I started using this device in early November and the figures were very consistent until the end of Jan at around 125/72. On all ocassions the day of the test was a 'shadow' day. The first reading in February was a totally PF day and the reading was 120/67. Then the attacks started. The next 6 readings were all on attack days, but with the attack being at various stages of development when the reading was taken. On all these 6 days the upper reading was between 125 and 133 with the lower readings being between 73 and 79. None of these readings would be considered at all abnormal, looked at in isolation, but when placed alongside the attack pattern, coincidences can be seen.
This brings me up to the present time. Although I now have no need to monitor my BP for the original reason, I shall continue to monitor it to place the record alongside the CH attack pattern.
Your further comments are very welcome.
Thanks for your time.
JoeKen
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Not sure I should be here, but it's as near as I'm going to get to finding out what is the correct name for my condition. Usually KIP 5 or below but last up to 16 hours and always one-sided, behind the eye, usually right but ocassionally left.
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dizzyd
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Re: CH and Blood Pressure
« Reply #9 on: Mar 24th, 2003, 6:30pm » |
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Hi JoeKen
I found your post most interesting as I too have had an elevated bp lately and it is causing a me much concern. I have always had a very low blood pressure except during an attack and now that I am chronic my blood pressure readings are always higher than they have ever been.
My doc refuses to give me any type of triptans/abortives due to the high blood pressure and I only take Sansert as a preventative and oxygen.
This really really is making me think now, I wonder if the chronic clusters have increased my bp or the high bp has increased the clusters. Again, the chicken or the egg.......................
Any other chronics out there with high bp?
DizzyD
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JoeKen
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Re: CH and Blood Pressure
« Reply #10 on: Mar 28th, 2003, 4:42pm » |
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Hi DizzyD,
Thanks for your response - sorry I did not get back to you earlier but my ISP has been 'down' a lot recently.
I'll try not to bore you with the details, but my GP prescribed me 1 x 2.5mg tablet per day of Bendrofluazide, to be taken in the morning, when he wrongly thought that I was suffering mild hypertension (diastolic reading just over 100). This happened to be in the middle of my first episodic attack of CH. The attacks stopped immediately, but as my main concern, and my GP's, was my allegedly high BP, and this was my first experience of what is now said to be Episodic CH, I did not make the connection.
9 months later, having agreed with my GP that I was suffering from 'White Coat Syndrome', rather than hypertension, we discontinued the Bendrofluazide. This was on Tuesday, and on Friday night/Saturday morning my CH was back. After a few weeks a Consultant Neurologist prescribed Sumatriptan tablets but the episode was probably reaching it's conclusion as I have only had need to take 1 tablet, which worked well but slowly. I await the next episode with interest, but also with trepidation.
The coincidence of CH disappearing and coming back with the taking and stopping of the Bendrofluazide may only be a coincidence but...........
Have a good weekend.
JoeKen.
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Not sure I should be here, but it's as near as I'm going to get to finding out what is the correct name for my condition. Usually KIP 5 or below but last up to 16 hours and always one-sided, behind the eye, usually right but ocassionally left.
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dizzyd
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Re: CH and Blood Pressure
« Reply #11 on: Mar 28th, 2003, 6:07pm » |
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Hi JoeKen,
Just came back from doc and I broached this entire subject with her. As again I had an elevated reading on my b/p. She agrees that is somethign to with the active clusters but remains very concerned. She has me set up for EKG "just to check". I am not yet on any b/p medicine but she claims I may have to start if my readings continue to be elevated.........here we go around and around.
You too have a good weekend and good luck with you meds and diagnosis. I hope with your remission from clusters your b/p readings will also diminish!!
DizzyD
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JoeKen
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Re: CH and Blood Pressure
« Reply #12 on: Mar 29th, 2003, 6:43am » |
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Hi DizzyD,
You don't say what your BP figures are, except to say that they are "higher than they have ever been". If your GP is not offering you anything for the BP, is it really that high? This is in no sense a criticism, just a query. When I went to see my GP about my b. awful headaches, he was more concerned about my BP, at 140/100, (which he described as mild hypertension), than he was about the head pain, and so he prescribed a mild diuretic, Bendrofluazide. His stated logic was that it was important to treat the BP, and the Bendrofluazide at 2.5mg per day was so benign that it would not be expected to adversely impact on anything else that was going on in this tired old body of mine.
As I posted earlier, he was actually treating my 'white coat syndrome', though neither of us new it at the time. My true resting BP is around 125/70 on Bendrofluazide (no CH), and around 135/80 when not taking Bendrof..., but I did suffer a return of the CH.
Maybe your GP is going through the same routine as mine - he monitored my 'white coat syndrome' for a few weeks and finally prescribed Bendrof..... when the lower figure remained above 100.
On my GP's recommendation I went out and bought my own automatic BP monitor, made by Omron - not cheap, but since I did this around 5 months ago, my GP has dumped his 'mercury tube' in favour of the next model up the Omron range. If you are seriously concerned about your BP you may consider doing the same, after all, according to my GP, it's your resting BP that is of interest, not the one when you're stressed out by a visit to the doc and/or an attack of the CHs.
I wish you well, in every sense -good luck.
JoeKen.
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Not sure I should be here, but it's as near as I'm going to get to finding out what is the correct name for my condition. Usually KIP 5 or below but last up to 16 hours and always one-sided, behind the eye, usually right but ocassionally left.
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Georgia
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Re: CH and Blood Pressure
« Reply #13 on: Mar 30th, 2003, 3:42am » |
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A very interesting query, indeed. Personally, my BP has always been very low, before and after I started getting CH. (I am a chronic, BTW) By very low I mean my normal BP is 101/63.
For what it's worth: A few years ago, I spent 5 days in the hospital for ch trying the DHE-45 Infusion treatment. The DHE-45 has the potential to raise your BP. Thus, the nurses had to check my BP every hour, all day and all night. When they woke me in the middle of the night to check my BP, it was so low that they coded me 4 times before they got the hint that the results they were getting were normal for me while sleeping (81/40, 79/38 etc).
On the first day of the treatment, I got a ch. They took my BP right before, during (that was an adventure), and after the attack. The right before was my normal waking BP, the during was elevated to 125/75 (high for me), and the after was again normal for me. In my estimation, my BP rose because of the anxiety that I inevitably feel during an attack.
I can not remember if I posted to you before or not regarding your headaches, so just in case I didn't:
I have had migraines for as long as I can remember, although I was not diagnosed until I was in 6th grade. I started getting clusters when I was 22 (I am 27, now). Since that fateful day, I have had pure clusters, pure migraines, constant shadows - yes, 24 hours a day 7 days a week, and what my neuro refers to as hybrids.
The hybrids have characteristics of both headaches, and for me, are the most difficult to deal with. They start the same way my clusters do... shadow starts to build, pain and tightness in my neck and shoulders. They progress much more slowly, sometimes taking hours to reach full peak. They can peak for hours. The pain feels like a cluster, behind my eye, in my teeth, in my neck, level 7 or 8...the tearing is there, one nostril runs like a faucet, the other is dry as a bone, my eyelid droops...but there is the addition of nausea, light sensitivity, and sometimes a warning aura. They do not respond well to any treatment...Imitrex, Zomig, Oxygen, Midrin...will all bring them down to a 4 or 5, but no further....and then they just stop....like the classic cluster end.....but the soreness remains, and the shadow creeps back.
There are so many variables with ch...tricky little beast...it is very difficult to say what is an effect of the ch and what is affecting the ch.
BTW - the egg came first.
PEACE AND LOVE,
Georgia
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JoeKen
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Re: CH and Blood Pressure
« Reply #14 on: Mar 30th, 2003, 7:12am » |
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Hi Georgia,
First question: - How do you keep so cheerful given the attack pattern that you describe? I think that I have a mild form of what you have (and I get pretty low during the attack periods) - shadows most days (7 days a week, every waking hour), the ocassional PF day, and episodal attacks (only 2 so far, last year and this, starting around late Feb/early March and lasting for 4 weeks, give or take),
I too have a history of migraines going back as long as I can remember, and sometimes some of the symptons of migraine are present during an attack of CH - a CH attack usually lasts 36 to 48 hours (unusuall I know, but the pain is different and far more severe and persistent than a migraine), whereas my migraines last a few hours and can usually be limited in intensity and duration if I can lie down in a dark and quiet room and 'nod off' - a night's sleep and they are always gone next day.
Going back to the CH and BP connection, I am beginning to wonder if there may be 2, (or more), factors coming into play to trigger an attack, both or all of which need to be present to set one off. My shadows vary in shade (?), from barely recognisable as such, to what can probably be described as a very mild attack. Yesterday I had all the early feelings that the b......d was about to strike again, but nothing materialised. On checking my BP I found that it was raised to the level that it is when an attack is on it's way - this was not anxiety caused by the fear of an impending attack, as I checked it several times, from early morning when there was no symptons, through when the shadow was at it's peak, and afterwards when it was fading and it was obvious that I had escaped - consistently slightly high.
One thing that strikes me in all the postings and other information that I read is that very few people seem to be researching into the causes of CH, all the effort seems to be being put into treating the symptons, with varying degrees of success - until someone tries to get a handle on this problem the only course is for we sufferers to try to work out for ourselves if our own attacks can be linked to any factor.
Keep smiling, we are in good company.
JoeKen.
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Not sure I should be here, but it's as near as I'm going to get to finding out what is the correct name for my condition. Usually KIP 5 or below but last up to 16 hours and always one-sided, behind the eye, usually right but ocassionally left.
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dizzyd
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Re: CH and Blood Pressure
« Reply #15 on: Mar 30th, 2003, 4:16pm » |
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Hi JoeKen,
Sorry for not leaving the b/p readings.........they call me DizzyD for a reason.................anyway, my latest reading was 138/98, and the one before that was 134/98. When I am not on Sansert and not in the middle of a major cluster attack, it was much lower and only 128/78. I go on and off the Sansert and although I have chronic clusters with attacks every day I have cycles where the clusters are stronger and harder to control with just oxygen. It is during these strong attacks that I switch back to Sansert.
Back when I tried Lithium and Verapamil my blood pressure dropped so low I had to be hospitalized for several days to be monitored (88/40) scary stuff. i kept fainting and was extremely fatigued. So they stopped those meds.....................
Again, I do not know what is going with my b/p I do not want to start another medicine but with the elevated readings I guess this something that the docs are concerned about so I may have no choice. She says the constant flux back and forth is not good either, so I am having my b/p checked again tomorrow so we will see........I hope it is low but I have been in the middle of a terrible cycle since January so the outlook is not good.
Very interesting this whole topic and I am going to start paying more attention and maybe get one of those home devices so that I keep a log and monitor my b/p myself!!
Thanks for all your info.
DizzyD
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Georgia
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Re: CH and Blood Pressure
« Reply #16 on: Mar 31st, 2003, 12:53am » |
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Quote:| First question: - How do you keep so cheerful given the attack pattern that you describe? |
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Me? Cheerful? Was it the Smurf song at the bottom of my post that led you to believe that? Damn Smurfs.
I am not always cheerful. Read the archives. I have been through some very dark days...days that I am amazed I lived through at all. The beast is just that, a monster that reaches into every aspect of our lives and tries his best to strangle the life out of everything he touches. Remaining cheerful as much as I can in the face of such adversity is just my way of sticking a knife into his underbelly. He will not beat me down, not so long as I keep fighting.
PEACE AND LOVE,
Georgia
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dizzyd
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Re: CH and Blood Pressure
« Reply #17 on: Mar 31st, 2003, 1:17pm » |
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JoeKen,
Update, just went for physical today and b/p was 115/86. Last week 134/78, really really strange stuff as I have not had a cluster in about a week!! Coincidence??
DizzyD
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JoeKen
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Re: CH and Blood Pressure
« Reply #18 on: Mar 31st, 2003, 2:12pm » |
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To Georgia,
We have a saying over here - you may have something similar on your side of the 'pond' : -
"nil ilegitimum carborundum", which (very) roughly translates as: - "don't let the bastard(s) grind you down". Keep fighting back, keep sticking that knife into it's underbelly, and keep as cheerful as you can. Apart from your own spirit, the other big thing that you have going for you is unlimited suuport from others (on this site) who really know what you are going through.
To DizzyD,
( ???)
The high figure gets higher whilst at the same time the low figure gets lower - strange or what ?? I hope that it is not beginning to sound like my 'hobby horse', but is it (also) possible that 'white coat syndrome' is playing a part in your BP readings? I thought that I was perfectly relaxed when talking to my GP - he has been my GP for many many years and I have always been registered with the same GP practice, even before he joined them - but my BP was 25 points lower (both Systolic and Diastolic) when I measured it at home, than when using my home BP monitor in the presence of the GP, for calibration purposes. This might explain some of the 'swings' in your readings, but surely does not explain 'one up, one down' as you have experienced.
Perhaps your GP would loan you an automatic BP monitor for a trial period to use at home. My GP, in the cash-strapped UK NHS system, has purchased 6 of these for exactly that purpose. In the UK (where we are told that we pay more than in any other country for almost everything), the monitor that my GP recommended cost the equivalent of US$160.00. If your budget will stretch to that after you have bought all the various meds that you need, the results may throw a little more light on the subject.
Let's hope the clusters have gone away for a (long) while.
We have a light hearted farewell in the UK - "keep taking the tablets" - but it doesn't feel altogether appropriate on this message board does it - so "keep smiling".
JoeKen.
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Not sure I should be here, but it's as near as I'm going to get to finding out what is the correct name for my condition. Usually KIP 5 or below but last up to 16 hours and always one-sided, behind the eye, usually right but ocassionally left.
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dizzyd
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Re: CH and Blood Pressure
« Reply #19 on: Apr 1st, 2003, 1:13pm » |
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JoeKen,
Good advice and I am going to do just that, ask my doc for a b/d device to have at home. I am a little skeptical as to accurate readings as they are just not even close half the time to what they were the previous time. I will keep track myself and try to define a more related pattern with the readings.
Thanks for opening the topic, I found your input extremely interesting and informative.
Stay well,
DizzyD
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ktuton
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Re: CH and Blood Pressure
« Reply #20 on: Apr 4th, 2003, 11:19pm » |
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 Hello fellow sufferers!
I'm a new member to this awesome network I never knew existed untill my loving wife found for me. I have had CH's since I was 18. I'm now 33. I've run the course with all the typical meds the neuros have us all try like lab rats and in June 2001, I had ingested so much maxalt and imitrex that I had a heart attack. I moved to Colorado from Kansas City in Sept. 2001 and remained cluster free untill feb. this year. I went to a neuro in Boulder that told me because of my heart conditon, I was SCREWED for meds that she could prescribe other than 80mg of oxycontin and oxygen. She sent me to physical therapy which was a first for me. My physical therapist started working on c1 and c2 vertebre because they were out of position. My CH's are always left sided. After pokig around on the left side of my chest and shoulders, he discovered swelling in my right hand and foot. He discovered that the ligaments attached to my heart and lungs were extremely tight and developed an interesting theory that all the tightness in my muscles and ligaments pull c1 and c2 vertebre out of position and therefore block the bloodflow of the arteries and veins in the back of my neck and won't allow the blood to flow normally therefore causing the blood to back up and posssibly cause my clusters!After all the shit I've tried, this makes some sense to me. I' ve had very high bloodpressure and I'm taking 5mg of Altace daily to combat it. I had 14 HA's yesterday and I'm DYING! I'm gratefull to have found this site and want to thank all of you for just being here.
Kyle T
1st time writer
Long time sufferer
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subluxationskill
New Board Newbie
I love YaBB 1G - SP1!
Posts: 34
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Re: CH and Blood Pressure
« Reply #21 on: Apr 6th, 2003, 11:59pm » |
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kyle,
Interesting connection your physical therapist has come up with. I am an upper cervical chiropractor. That means I work on the upper two bones in the neck the atlas and axis. I just had a new patient in the office 10 days ago who sufferes with ch for the past 18 years. I have seen lots of migraine suffers but this is only the second ch sufferer. It has been my experience that the second cervical vertebrae is closely associated with headaches of many types. The most recent ch patient had a 4 millimeter misalignement on the axis vertebrae and was corrected 8 days ago. Time will tell how she does with the care. I stumbled across this site a few weeks ago after I ran into a friend whose friend sufferes with ch. I wish you the best and your physical therapist may be on to something. The upper neck area houses the brainstem and vertebrael artery, which supplies the brain with blood. Good luck in your quest for a solution and if you are interested in finding out more about upper cervical specific care look at www.erinelster.com or www.blairchiropracticsoc.org.
Best of luck!!!
Drew
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