Monday, May 28, 2012

A little about me and my frustration

By PainHead Friday, September 26, 2008

Hi fellows!

 

As I have registered here, I'd rather give you a short introduction.

 

I am a 27 yr girl from Norway, have suffered from migraines since my late teens. Until the start of this year my episodes wasn't so frequent. I dealt with it, didn't take any meds as otc's didn't help anyway. Migraines runs in my family from my great grandmother down to me. My mother never used meds for her episodes, so neither did I. Actually I didn't even think of it, in spite of being a wreck when they occured - once now and then. Ranging from once a month to three during stressfull periodes. But this year the migraines went from being able to live with to interfiering with daily life. Since I allready see a neurologist for rutine follow ups due to epilepsy (zeiure (sp?) free for nearly three years), I put him on the case. Tried a bunch of triptans which has a moderate to good effect - especially Maxalt (rizatriptan). Now I have been put on a preventative since I've had 4-6 migraines a month for a long time. Started taking it a week ago, increasing the dosage to half of what I am supposed to take two days ago, increasing to maintainance dose in a week. Atacand is the name of the drug - I have not seen it mentioned on any American site, but it's a drug meant for high blood presure. Not a beta-blocker but something more like an ACE-inhibitor. It's the newest and most prefered according to my neuro.

 

Unfortunately I have suffered some other headache problems since june. This is undiagnosed yet. It's a stabbing pain behind my right eye on and off during the day. It doesen't really meet any of the criteria for ice-pick, cluster, cph or hemicrania continua. They last to long to be cph or cluster, but it has escalated. My suspicion is that this headache might originate from my neck. Though, there are some symtoms that are not asosciated by that alone. My eye runs, and my nostril at the same side either runs or feels a bit swollen.I have decided for myself to give this some time, seek my neuro if acupuncture or physiotherapy wont help.

 

This is maybe stupid of me, because I really spend all my energy on looking "normal" among people. Alone I groan, swear and press a cold cloth on to my head.

 

TWell... This post didn't get so short as I had intended. Guess I'm telling you all this out of frustraition, trying to seek all the info I can get. I am exhausted with theese daily headaches. Every */&¤¤(/( day I wake up feeling like I'm going to have a migraine and it takes some strong will to get out of bed, have some breakfast and get through the day with these on and off pains that can be completely excruciating. I'm on disability due to other cronic health problems - which really allready is enough to disturb my quality of life.

Made contact with my dr
Nancy Harris Bonk, Health Guide
9/29/08 2:44pm

Hello, and welcome to MyMigraineConnection.com!

 

Atacand (angiotensin II receptor antagonist) similar to an ACE inhibitor is used to treat high blood pressure and also Migraine disease. Migraine is a genetic neurologic condition as you can see from your family history. Receiving an accurate diagnosis, managing and identifying our triggers and being on a preventive plan can help reduce the number and frequency of attacks we have. This is very important because having a long history with Migraines can cause brain damage. This article: Yes, Migraines Can Cause Brain Damage will fill you in on all the details. 

 

We do have a section on the various types of Migraines and headache disorders. It is possible to have more than one headache or Migraine at a time. But only your doctor, or a Migraine specialist can diagnose you. Click HERE to see our patient recommended direcory. 

 

Thank you for creating a SharePost. SharePosts are a form of blogging, and there are many things you can do with them. You can share an experience, suggest something that's helped you, use SharePosts as a Migraine and headache journal, and many other things.

We also have a discussion forum that you may want to check out. Especially if you have questions or are looking for information, you may find the interaction on the forum to be quite helpful. To get to the forum, just look for the orange box marked "Manage" and click on the Migraine Forums link. Because our forums are maintained by a third party, you'll need to register for the forum. You can use the same information you used to create your community log-in if you like. If you want to go directly to the forum, you can click HERE.

Along with your personal "My Home" page and the discussion forum, you'll find links to a great deal of helpful information and a spot to sign up for our free newsletter on the main page of our site, http://www.MyMigraineConnection.com.

If you have any questions, please feel free to post them to the forum or send me a message through my profile.

Welcome again,

 

Nancy Bonk
MyMigraineConnection.com Expert

10/ 3/08 5:00pm

Dear PainHead,

 

I so know how frustrating and discouraging it can all be, but whatever you do, hang in there and keep trying. I haven't given up for almost 40 years, although my situation is different, and I don't have the epilepsy complication. Keep working with your doctor, and maybe there is some comfort in the fact that there is so much more knowledge and research and many more potential treatments now than just a few years ago. There can only be more hope for the near future. I sure hope you and your doctor can soon determine what the 'new' head pain is and you find some relief!

 

Take care,

Betsy

10/ 4/08 7:51am

Thank you all for your empathy en info!

 

I actualli think Atacand allready is working for me! The migraines haven't come so frequently, and those I've had recently have been minor compared to what I have had before.

 

My epilepsy is not a complication to the migraines. I was unlucky, the first attack just came out of the blue in 98. It has been some detective work to get the zesures (I never remember how that is spelled ;) ). But at the time being I'm close to three years without having fits. Lamotrigine and clonazepam has saved me. The "good" thing is that I allready had a connection with a neurologist, and didn't have to see my gp and get a referal. I was really happy to have a specialist that allready knew me well.

 

I found out of the formus eventually ;). It just took some time to understand that I had to register once more to use them.

 

At the time I'm not at home, so my access to the Internet is limited. I'll try to keep you posted as soon as I get home.

 

Best whishes!

10/ 5/08 12:46pm

Dear gal from Norway,

I have just started nerve injections at the base of my skull area because my headache doc thinks inflammed nerves and sore muscles might really be contributing to my frequent(I understand what you are "silently" suffering) migraines.  He is also going to complement this treatment w/ accupuncture and physical therapy, so you are asking the riht questions.  There is a condition called occipital neuralgia which can aggravate migraine symptoms and like the stabbing pain you are having behind your right eye.  I would encourage you to ask your doc.  WIth much support in your plight, Kd, Austin, Tx

10/ 5/08 4:33pm

Hi there :)

 

I have considered that explanation to my pains behind the aye. Actually I was thinking obout finding an accupuncturist to see if that helps me. I've had psysotherapy, which did no good for those pains. I got rid om the tension headaches I get at times, but not that s**t behind my eye. I just reaaly don't understand it because I get a few other symptoms with them. Tearing from the eye and a runny or slightly stuffy nose. Somtimes I have sweat at the forehead - just at the pained side. Theese things are assosciated with cluster headaches and simular conditions, but I really don't think it can be that because the pain is bearable. In june I had an acute excruciating headache episode. Neuro suspected a single cluster episode. The pains I experienced then was A LOT WORSE than those I get now. A bad migraine is very painful. But the pains I experienced was beyond imagination?

 

But what ever this was, and what I now experience there seems to be nothing wrong that can be detected through x-rays/imaging tecnology.

 

Anyway I stick to this occipital nerve thing, or cervicogenic headache - think that's the same tning.

 

Bby the I certainly can tell the difference from migraines and those other pains. My migraines litterally slam me to the bed. It throbs often all the half of my head is panfull and the pains tend to change sides during migraine, I get nausiated, every little sound is intensified badly. Light kills me.  I don't get this with my dayly pains. They feel worse when I'm calm. I need to moove a bit. My soscial life can be exhausting some days if this happens much, because I do whatever it takes to hide that I'm in pain. At times I have to be alone, leave the room to go to the toilet or something. But I have had periodes without such pains, so I hope for a pain free future. Accupuncture works wonders for a lot of problems. Those needles cured me from chronic tendinitis among other things.

10/ 8/08 4:50pm

Progress! I feel sure avout the Atacand now. It's just awsome to have gone through tree weeks without having a migranine! And the one I had approximately three weeks ago was minor. Highly discomfortable, but It didn't keep me from functioning - (normal sicial life and little psysical strain). I really pray for this to be the Atacand and not just luck.

 

My other headache issue was gone a few days, but it's back again. Not having so frequent episodes during the day, but it still comes and goes. Generally lasting from 5 - 60min. Sometimes longer. Never eksperienced over three hours. They have a quick onset which is very very painfull. Why am I so reluctant to see my doctor? ... It's indeed weird, but have some sort of fear of doctors/hospitals. That's not a good thing when you are born visually impaired and need to see an ophtalmologist once a year (I have had him take a look at the panfull eye by the way - he found nothing), you have diabetes 1 and have to see a specialist for that about four-five times a year, epilepsy and neuro followups, bipolar ll and in psychotherapy, needing a psychiatrist to follow up the neds I take for that. I'm stable, no symptoms for three years.... I believe it to be post traumatic stress, and som kind of an "overdose of doctors." God I feel like one giant desease-thing after listing up all this. But I am still human, leed a life as close to normal. But the ptsd-thing... My diabetes presented very acute, only with minor leading symptoms (increased thirst and frequent urination). I had the symptoms to some degree, and I did loose weight. But it wasn't very pronounced, and I had just recovered from a bad viral brochitis. Then BANG - I got violently ill. Ending up in anbulance with sirenes and blue lights, feeling like the driver tried to get airborne. VERY VERY exhausting and acually quite painfull treatment after arriving at the hospital. Just 24 hours later a doctor told med that I'd probably not would have survived if I had arrived just an hour later. "You didn't com a second close to to early," I was told. Of course all this was a shock. Suddenly getting a diagnosis I knew would last for life, a desease that needed a lot of attention. This in the addition to the quite close to death situation and the treatment I went through... Most wont experience that luckily. One of my IV's (I think it was the kalium hurt me like mad. Just like someone poored acid into the vein and surranding tussue. I had a significant 2cnd/3d degree burn injury, needing debrieding surgery - which was less painfull!. This IV tortured me for three days before a nurse "woke up", diluted the solution and adjusted the infusion speed accordingly. No more pain! This happend to me right after my 15th birthday. Admitted to hospital 13.03.1996. I can't forget that date. Never.

 

Then I had my firsr seizure 01.11.1998. Can't forget that date either. New ambulance ride. Admitted for observation. CT, EEG, bloodwork, thourough psysical examination... Scared to death (after following the "ER" and "Chicago Hope" you think of  lots of dangerous things that might cause your symptoms). Nothing wrong found. Since I only had one single fit, I didn't meet the criteria for epilepsy - for which you must have >2 seizures. Therefor the neurologist I had back then first blamed it on sleep deprivation and heavy stress. Then my second sezure came at school. I just remeber waking up on the floor between twoo rows of seats. Someone holding my hand, telling me to relaxe and that the ambulance was to come soon. I get extremely disoriented after my seizures, and didn't quite understand what was going on. The first time my parents were ther and told me I had suffered a seizure. But just when the guys from the ambulance It came to me, my mind and ability to speek was back. I understood more then, and I remember aking the teacher if I had suffered cramps. She just nodded. Poor thing, she looked like she'd seen a ghost or something. ... My third ambulance ride in my life, but no sirenses or hospitalisation this time. I was assessed by a doctor, who didn't find anytning wrong. He urged me and my mother (who luckily was contacted and came to be with me) to get to that neurologist asap. Stupid man didn't whrite a referral, so my mother and I just appeared at the hospital demanding to se the neurologist. He was of course buissy but took some time to talk, and set up an appointment a week later. Until then I had my third seizure, and I was put on an anticonvulsant.

 

LOOOOONG story, but it tells something about connecting doctors to traumatic episodes I've had. To me a seizure (the grand mal type is what I've had) is traumatic itself. It's rare, but I don't loose conscionsness completely. Therefore I can actually feel the whole grand mal. I feel that I can't draw air, things get blurred or black, I gasp, feeling the cramps to the vokal chords, hearing that sound, feling my body paralyzed from the the cramp, my limbs twitchng. They didn't last long back when I had them, but the usual 30-60 seconds felt endless. I was only partly conscious, so I suffered disorientation difficulty speeking. I knew what I wanted to say, but the words didn't come out right. If I was alone, I sometimes did completely crazy (not dangerous) things. The state I was in after a fit alvways caused intens amxiety - what if I don't get normal again! Regaining complete consciousness/ability to speak after a seizure generalle took 30-45min. Absolute HORROR!

 

My brain seemes to be a real rebell. When the epilepsy was in control, migraines started. Alongside of this my bipolar disorder. When both the epilepsy and bipolar disorder is stable (no symptoms), my migraines skyrocket in numbers. Besides, another headache condition occurs.

 

Oh... This went from an Oh so good to be migraine free for three weeks to Oooooh I hate doctors and I've experiensed so horrible things... I am really sorry about venting like that, but I needed it. Something keeps me from seeking a doctor unless it is close to emergency. I keep the appointments thet doctors set, but calling them to rush appointment - happened one time, and I had to ask someone else to make that phone call. My neurologist is a skilled doctor, but he is a nerd, and not so skilled at conversating.  Not a man who makes me relax in the chair. He is really very well intentioned and does his best, and he has been of much help. But something just keeps me form calling him. I have problems seeing him alone, need to have a trusted person at my side. This is frrustrating. Having a great doctor you want to keep kontact with for his knowledge and skills - and then have such problems. But I'm hopless with this doctor-thing. I have trouble seeing my psychiatrist, which is the least "doctorish" doctor I know. I communicate via e-mail if I need prescirptions. Othervise I have my psychologist talk to her. It's so incredibly stupid, and I am seriousely embarrased of it. I with all my conditions shouldn't have problems with seeing/contacting doctors!

10/ 8/08 4:58pm

Just a date edit. 13.06.96 is the correct date of my first rush to the hospital .

1/24/09 10:34pm

I too am on Atacand for chronic daily "migrainous" headaches.  I have been on numerous preventatives that all had terrible side effects for me.  Atacand has been the only drug that I have really seen a significant improvement in the daily pain level.  I am almost 52 and started having headaches 3 years  while being treated for depression.  Up until that time I would consider myself a very healthy person.  I am at a dose of 12mg and was doing really well for about 5 weeks, then PMS set in and my severe daily headaches returned throughourt my menses.  My neurolgist who  comes from a very prestigious and well known headache center in the northeast put me on a prednisone taper for 6 days.  Im on day 2 and I havent felt much different.  So Im quite discouraged after feeling like myself for about 5 weeks and then for the pain to start again.  I am sure we will discuss increasing the Atacand. I also take Elavil 60mg and Klonipen 0.5mg 3 times a day,  along with some herbal supplement, Migrelief, CoQ10 300mg and just recently started Petadolex which is Butterbur.  So Idont know if Atacand is going to be my answer of possibly menopause but I'd be willing to increase the Atacabd and see if I get positive results.

 

Good luck,Susan

By PainHead— Last Modified: 09/03/10, First Published: 09/26/08