bizbiz Posted January 30, 2009 Report Share Posted January 30, 2009 It seems that a lot of us have chronic headaches / migraines. From about a week before I crashed / got POTS, I have had a headache pretty much every day. I was just curious to see if its the same type of headache everyone else gets i.e: is there a 'typical' POTS headache, or are our headaches all different?I guess I really want to know of mine is from the POTs, or just a coincidence?My headache is actullay not really a headache as in pain, but more of a pressure feeling at the back of my head / top part of my neck, and kind of referrs to behind my nose, if this makes sense. Sometimes I could swear that its sinus pain, sometimes I think for sure I have pulled a muscle in my back and its just referring up my neck. Sometimes I also feel a pressure sensation behind my left eye. This pressure is never there in the morning, and seems to get worse as the day goes on or sometimes if I sit - it can be relieved by standing - which makes me wonder if it is a muscular thing, because if it was a POTS thing it would get worse with standing?Sorry to ramble on! Quote Link to comment Share on other sites More sharing options...
Ernie Posted January 30, 2009 Report Share Posted January 30, 2009 Hi,I have migraines and headaches and the doctors say it is linked to POTS. Quote Link to comment Share on other sites More sharing options...
bizbiz Posted January 30, 2009 Author Report Share Posted January 30, 2009 I fogot to add - This wouldnt be blocked CSF would it? And does anyone know what the symptoms of blocked CSF would be? I did have an MRI done - I'm guessing that they would have mentioned blocked CSf if it was an issue. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted January 30, 2009 Report Share Posted January 30, 2009 I have true menstrual, untreatable migraines that did not respond well to medication until I tried naratriptan (Amerge.)ANDI have THIS headache that I have had every day for over two years. If I cough, sneeze, bend over, enjoy nocturnal adult activity, or exercise it makes it worse. It is unilateral, the same side as my migraines, photophobic, throbbing and varying in intensity. It DOES not respond to any migraine med or any other med but Klonopin or sometimes Lyrica. It is left sided, at the back of my skull, radiating up over and into my ear and ending behind my eye and temple. It keeps me from sleeping, it wakes me up. There is a poll about the POTS headaches somewhere in the past posts.Sorry to be grumpy, but my head hurts! Please come shoot me! Quote Link to comment Share on other sites More sharing options...
julie f Posted January 30, 2009 Report Share Posted January 30, 2009 I have had migraines with auras since I was 13. The only good thing to come out of my POTS diagnosis was that I was put on a beta blocker, and it has been helping to control my migraines. According to my dr, if I go off they will come back. I have gone from daily migraines to monthly. Actually, I had one today. Sometimes the weather will touch them off. Quote Link to comment Share on other sites More sharing options...
all4family Posted January 30, 2009 Report Share Posted January 30, 2009 Hi,I have constant head pain. All over pressure, and I get migrains too was told some of my vision issues were migrains. I get a pressure pain behind my left eye. My muscles on my neck hurt always. and the base of my head swells a little and hurts. So sorry you are hurting so bad Jennifer. But we couldn't come shoot you. We would miss you too much. I hope you get feeling better real soon. healing hugs to you. Suzy Quote Link to comment Share on other sites More sharing options...
bizbiz Posted January 30, 2009 Author Report Share Posted January 30, 2009 Thanks.I will try to fond the poll on POTS headaches.I'm just sick of this pressure feeling in my head everyday. Actually, I'm just sick of POTS. I just want to be back to normal. Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted January 30, 2009 Report Share Posted January 30, 2009 Hi,My headaches are all mainly under the migraine umbrella. I also get aura symptoms- with or without the migraine pain. I guess every once and a while I will get a headache with no aura, photophobia, sonophobia, and whatever the -phobia is for smell (it isn't coming to me right now). Today I had a bit of a migraine- weather, medication, and cold related. Besides the pain I noticed some visual aura symptoms and was very sensitive to smell. For some of what you originally described you may want to search the board for coat hanger pain and the headaches that it can cause. Quote Link to comment Share on other sites More sharing options...
mkoven Posted January 30, 2009 Report Share Posted January 30, 2009 I get migraines, sometimes with aura, sometimes without, sometimes just the aura. Tight muscles in my neck can set one off. My hormones are a huge trigger. I never really had headaches until 3-4 years ago- I'm 42. Some of my migraines were triggered by sleep apnea. Cpap treatment has been a remarkable relief--in the severity, frequency, esp of the auras. I used to wake up in the middle of the night with a horrendous headache (hurt too much to have my head touch the pillow), with the ceiling flickering as if there were a strobe light or spinning, my ear ringing, wanting to throw up. That type of headache stopped completely when I startedtreatment for apnea. I still get a bad, can't-leave-the-house migraine twice a month, and mild/annoying one-sided headaches several times a week. Sometimes I can zap a headache early on with exercise--so I think blood flow is part of the issue. If it's a bad menstrual migraine, I haven't found anything that works yet. I can't take triptans. Quote Link to comment Share on other sites More sharing options...
masumeh Posted February 1, 2009 Report Share Posted February 1, 2009 Usually back of the head and neck kind of head aches are stress headaches. Tight muscles. Try relaxing, rolling your neck from shoulder to shoulder (in front, not to the back), taking a tylenol (this works well in any case, but especially if it's your muscles), and exercising (if you can). I found that I get some headaches when I am dehydrated, especially while in Midodrine. I also get headaches from sound and light. The light ones I get in the front, forehead area. The sound ones I get on the sides of my head, around the ears. It's not an ear ache, though, it's a head ache, very deep. This is really POTSy, overstimulation of the nerves.Good luck reducing your headaches....although it's not usually the worst of our symptoms, it can be very debilitating and of course annoying and mood altering. Quote Link to comment Share on other sites More sharing options...
kkrylee Posted February 12, 2009 Report Share Posted February 12, 2009 All of my daughter's symptoms began at age 13 with vision blackouts. Then at 16, she had an episode with temporary peripheral vision loss, dilated pupils that would not constrict, and a headache pressure at the base of her skull. It has now been 16 mos since that episode and the headache pressure has never left her. It is 24/7. She has other headaches more like migraines that come and go in addition to this headache pressure that is constant.Unfortunately, we have no answers. She is still not definitively diagnosed, but it is assumed that she has an autonomic dysfunction. No one in our state (Louisiana) is knowledgable in autonomic disorders nor does anyone in La do autonomic testing. I am trying to get her to see someone for this out of state. Quote Link to comment Share on other sites More sharing options...
Guest brianala Posted February 12, 2009 Report Share Posted February 12, 2009 I have Acephalgic Migraine (aura without headache) and icepick headaches. I was on Frova, since my migraines were generally related to my menstrual cycle.Some of the aura I have experienced:- Scintillating scotoma (loss of vision)- Loss of hearing followed by tinnitus- Auditory hallucination/repercussion (palinacousis)- Olfactory hallucination- Visual snowThe aura is more frequent than the headaches. The icepick headaches are usually separate from the aura, but every now and again it will follow the common aura-headache pattern. Quote Link to comment Share on other sites More sharing options...
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