New Daily Persistent Headache Support Group

Hi,

I had migraines before my NDPH started. I got my first headache at afe 12. After that, I would get 2-3 a year that responded to medication- I might miss half a day of school. I did have two headaches that lasted about a week before the onset of NDPH. When it started, I thought it was just another migraine- how wrong I was.

Pain free days,

sailingm

I NEVER had a headache before I developed NDPH, and noone in my family or extended family suffers from migraines. I went to MHNI and met Dr. Rozen himself as well as Dr. Saper and the rest of the team of dr.'s. After 16 days in the hospital, no IV cocktails or abortives stopped my headache cycle. However after having cervical facet nerve blocks, and botox I feel that I may be doing a little better. After the blocks were completed I have started noticing that when I take abortives they actually take the edge off my headache, versus before the blocks when they were completely untouchable. Most notably I have been taking neurontin as a preventative and I feel that it has been helping the most. I had a spinal tap at MHNI and was tested for an elevated tnf, however, it was determined that mine was not eleveated.

Anyone looking for information about Dr. Rozen need look no further than www.mhni.com or simply search Michigan Head Pain and Neurological Instutite on a search engine.

I experienced pre-menstrual migraines for several days before my period started since my menses began @ 11-yrs-old. NDPH didn't start till I was 30-yrs-old, but always worsens for several days before my period should start (despite having an IUD that prevents actual menstruation x4yrs.)

peacefrog, I also have worse pain around my period (up to a week before hand and several days into it). There are quite a few of us that have this problem. I am now pregnant and my pain is much better as the doctors suspected it would be. Anyone who has any hormonal fluctuations in their pain tends to get better when pregnant (anecdotal evidence by my neuro only). This may not be relevant for you but I thought I'd mention it

Enbee, thx for the reply. I m very curious to hear u r now pregnant (congratulations!). What r u doing n terms of pain mgmt? I just turned 39 & have been looking into adoption b/c I m afraid of how I would b w/o all my meds. My doc has told me I could use methadone if needed (currently taking morphine, oxymorphone, soma, dolgic to name the most potent/risky ones) but would likely have a newborn who would need to go thru detox. If u wouldn't mind sharing a bit of ur experience, I can't even describe how much it would mean. Similarly, I m quite concerned @ how well I could handle a child (my husband's concern too) even though I m now on full disability so can b a full-time, stay- at-home momma. Thx so much & best of luck!

I have had two headaches in my entire life. One when I was ten years old. I took an advil and went to sleep. It was gone when I woke up.

I tried that with the next headache (when I was 16) and when I woke up it was worse. It never stopped after that.

@peacefrog, I am now 18 weeks pregnant and things seem to be going OK pain wise. It was a planned pregnancy so meds had been discussed with my doctors in advance. I was on Cymbalta, Seroquel and Maxalon and Stugeron prior to pregnancy. It was decided to decrease my doses of Cymbalta and Seroquel slightly but otherwise I was on the same med combo. Once I was pregnant I stopped using the Stugeron as it may be potentially dangerous in pregnancy. The other drugs are considered accpetable provided there is medical need for them. After the first trimester I reduced my Cymbalta again to 30mg/day and Seroquel to 25mg/day with a view to getting off them by 30 weeks, mostly so the baby isn't born while they are in my system as they can affect how settled the baby is. This is going to be reviewed as I go along though and it might be decided to keep me on meds if I do better.

So far I'm doing OK with reduced meds. The pregnancy hormones seem to help my pain and I'm averaging around a 2/10 most days with the occaisional bad day. The first trimester was rough as I had very bad 24/7 nausea and lots of fatigue. I normally have fatigue and nausea anyway so the pregnancy symptoms on top of that made it hard. It wasn't anything I couldn't handle but now in the 2nd trimester I'm probably feeling as good as I have since I got sick.

I'm pretty sure that methadone can be used in pregnancy and certainly there are other drugs that are considered acceptable if needed. They really want you to avoid things that can cause birth defects (depakote is particularly risky). Drugs that have addiction issues aren't ideal but not necessarily a problem if it is managed appropriately. I'd encourage you to talk to your doctors and see what they suggest.

There isn't much info out there about NDPH and pregnancy but my neuro has had a few patients that have done well. He has said that some have even maintained their improvement after the baby is born (it's like pregnancy flicks a switch that helps with recovery). This is not guaranteed but if you are thinking about children anyway then it's something to note.

I will admit that I'm quite worried about what will happen when the baby is born as sleep disruption and stress make my pain worse plus the massive hormone shift will likely make things worse for a period. I figure I have dealt with months on end of 10/10 pain so I will get through it with help. I have relatives near by and my parents will come to stay and help for a few weeks when the baby is born. My midwife and GP are also aware of my medical issues and we will hopefully come up with some strategies to deal with the pain and a new baby!

I'm also on disablilty so am already at home and can be a full time stay at home mum. My husband was (and still is) concerned about how I'll cope with a child. So I understand those worries. If you have friend or family support at least you'll have something to fall back on if you need a break. I think it's hard for our husbands to want to do something as big as having a child when they are already dealing with a sick wife, but I'm sure it will be worth it in the end.

Any questions, feel free to ask

peacefrog-This discussion is intriguing to me as I have serious doubts I'd ever want to have a biological child due to my health problems, genetic health history, and current narcotic use...if we do decide to have kids, I've definitely push the adoption route. I don't want to feel selfish nor guilty. Pain meds have been used successfully in pregnancy for many (yes the baby would have to go through a detox), and in most cases, having the pain under control is better for the baby's health than having a mother in pain and likely high blood pressure, etc. There are risks each way though, and of course something to plan ahead for. I'm only 24 so its something we haven't got too much into in my marriage. I don't think being a stay at home mom would be any easier on me than my current full time desk job...probably much tougher due to the lack of sleep and such on top of the day job. But, if I did choose to have kids, having a stay at home parent until the child was in school would be the only way I'd do it. Best wishes.