undiagnosed head pressure, nech pain, headaches, vomiting

[laraine911]

Hello, I hope someone can help.  On May 22nd 2013, I went to the ER with a massive headache.  The headache came on suddenly from the back of my head and immediately caused me to start vomiting.  I would say the worst pain ever. I got a CT scan, a spinal tap, and they knocked me out with some meds.  The tests came back clear of any cause (brain bleed, menengitis, anuerism, etc). After that, I had a continual pressure in my head that would increase if I bent over, got up too fast from sitting, sat down too fast, laid down too fast, sat too long... and this is still going on after three weeks.  I had two more severe attacks like the first one, brought on by the pounding after sitting down too quickly... I do not know what triggered this problem.  The doctors seemed stumped.  I have been back to the ER another time.  I've seen my family doctor and my neurologist.  We started with a steroid pack (5day pack) and typical migrain meds (zomig, imitrex, and fiorinal) - none of them have any impact on the head pains and have not prevented the throbbing.  I've had migraines since I was 11 (29 now) so I guess they thought that's what I was having, but I do not think so.  These are nothing like my typical migraines and the migraine meds do not work.  The last attack, they gave me a steroid shot, a shot for the nausea because I couldn't stop vomiting, the vomiting would cause more pain, and the pain was causing more vomiting and on and on.  Since then, I've been on muscle relaxers and pain killers with an MRI scheduled in a couple of days.  I haven't had another attack in a week, but I think it's only because of the meds.  I'm still in constant pain in my neck and back of the head and I get incredible throbbing when I make any quick move, like my head will explode in any minute.  I hate not knowing what this is.  My life is significantly impacted by this.  I have a two month old son that I cannot even pick up without causing the damn throbbing.  And I'm at a loss.  I've been reviewing some of the forums here where there are others with the same symptoms, and lots of posts of folks with similar problems posting about their issues, but I haven't seen anyone post what the heck this is.  Please, if you can help, reply to me.

[sara12345]

Thanks so much.  I really appreciated your help.  And now I know another term, JMHO--LOL.

[selmaS]

  Hi ...sorry JMHO means just my honest opinion....

Chiari often times is seen by Drs as an incidental finding and not always a cause for concern and is not always reported to the patient.....this is y on the Chiari forum here on MedHelp we suggest always requesting copies of ALL testing and reports .

I was not trying to DX ur symptoms but the other poster u asked what the terms meant, I did not know ur issues and I am not a medical professional just sharing info I do know so others can check it out and rule them out.

[sara12345]

Selma,
Thanks for your help with a further diagnosis of my migraines.  

Could you explain what JMHO means?

Wouldn't the doctors have diagnosed Chiari Malformation from all my MRIs, MRAs, and CT scans?  I've had a lot of all of them.  And I've had these looked at by 3 neurosurgeons and 3 neurologists.

I looked up POTS and don't have much of the symptoms except the headaches.  I don't have mental clouding, blurred or tunneled vision, shortness of breath, palpitation, tremulousness, chest discomfort, lightheadedness, nausea, hypotension or tachycardia.  Also don't have one of the varieties with significant tremor, anxiety, and cold sweaty extremities when upright.

BTW, my migraines were caused by a major stroke-- a carotid artery dissection.  They were severe 24/7, but now with all my injections and meds, they are severe only frequently.  Thanks so much for your help.
Sara

[selmaS]

  I am glad the info was helpful in some way....TOPAMAX takes about 2 weeks to adjust to, so expect that u may feel extremely tired and foggy when u first start taking it...and yes it is a form of diuretic so if u have a raised ICP it should help.

Do u have a copy of ur CT and MRI...and the reports? Some times some conditions get overlooked as they are considered an incidental finding or is missed....do get copies of ALL testing along with reports so it is easier to go for a 2nd opinion if the need arises.

All the best to u.

[laraine911]

Your original post led me to do a lot of research on intracranial hypertension and the symptoms matched up so incredibly close I brought it to my neurologist - he told me that it was plausible, but not likely that I had it.  The CT scan and the MRI both do not show pressure on my optic nerve, but he knows that ICP can present even without that.  I had a spinal tap at the ER, but unfortuneately, they didn't check the pressue.  And my doctor hasn't ordered it to be done yet.  I still have a constant headache, since may 22nd and pain in my neck for no reason.  He tells me that the neck pain is a common complaint of migrain sufferers and that it's more likely that my migrains have gotten worse since the recent birth of my child.  I haven't had any more of the really horrendous episodes of explosive head pain or needing to go to the ER... not yet anyway. and the thundering throbbing has subsided. I'm just left with this neck pain and constant headache with the occassional typical migrain that I'm used to. My neurologist has started me on Topamax - he said that it has an ingrediant similar to what is used to treat ICP, so it's like killing two birds with one stone even though I didn't get the pressure test to check for it. - I'm just hoping to get rid of this constant pain soon... the day to day living through it is draining - physically, emotionally, and spiritually.

[selmaS]

  Yes, ICP intra cranical hypertension is too much CSF and a LP lumbar puncture is done to see opening pressure ....POTS can be similar but is more a positional issue and a tilt table test is done.

Many times if u have HA's with exertion it can be due to another issue not just something to accept....JMHO....as I had that and was Dx'd with Chiari Malformation,

All I am trying to say is get more testing to find the root issue.

[sara12345]

I can't understand what Selma is talking about.  It may be similar or the same as when my neurologist had me get a spinal tap to see if the pressure was too high.  He thought that could be the reason why my migraines got worse when I got out of bed.  It turned out normal.  Just the physical exertion was the cause for me.  But it could be a cause for you.

[selmaS]

  Hi u may want to get checked  for a condition called POTS...u seem to have issues with a change in ur posture/position......another issue similar is ICP or intracranial hypertension.....also known as pusedotumor cerebri....basically too much CSF fluid and it causes pressure  headaches....

There is testing to DX either of these....I am not a medical professional but from what u mentioned I would at least rule these out.

When u have ur MRI request copies on Disk and a copy of the report sent to u....do this when u sing in for the testing as u will have to sign something for the report to be sent.

  Good Luck with ur MRI.