Where to go from here?
Any insight?
I have a long history of suffering from migraines over the past 15 years. It's up and down in terms of how debilitating they get. In the past year I have tried a healthy lifestyle, journaling etc looking for trends before resorting to medications. I was put on topiramate by the GP. I had good success on this for around 3months before the migraines returned although it did have some side effects. After consultation with the GP we decided to try something else rather than up the dosage as more research has come out about the impact during pregnancy and we are hoping to start trying to conceive soon.
I then tried Venlafaxine. I felt better in between dosages but still had some migraines. The dosage was upped again with mixed results. I was also prescribed Imigran (nasal version) to manage the migraines that did occur.
Recently I had a migraine so took the Imigran around 3hrs after the Venlafaxine and went to bed. When I woke up I felt twitchy and not myself. Within half an hour this escalated to:
Scratching/clawing at my head (it wasn't actually itchy I just had a compulsion to do it):
On and off crying
A shaking leg I couldn't control
Strange, cold and painful sensations in the leg
Mild tremors in my other leg
A cramping and painful arm
Strange, cold sensation down my neck and across my shoulders
Rolling eyes
My tongue making weird movements
Rapid breathing
Temp of 37.4
Normal hbm, blood pressure, sugar and ketone levels
I was fully aware of my surroundings and able to answer questions using short responses although I did struggle to find some words
This lasted approximately 5 hours.
The paramedic said he had never seen anything like it, neither had a family relative who used to be a nurse (A and E then neurology). The paramedic gave gas and air to help my muscles which helped short term to calm it but didn't stop it. Once in A and E I was given diclofenac and diazepam which helped. I was discharged.
Fast forward and my GP wouldn't see my the next possible day so I went to the pharmacist to see what I should do about the meds. She was concerned about Serotonin Syndrome and rang the GP insisting I get seen. They agreed to do a call back which was just to tell me to continue as normal on them until the next appointment (2 days later).
My dosage was halved and 2 weeks later I am a mess. Long migraines, needing to sleep most days (only managed 2 nap free days in over 2 weeks), emotions all over the place, twitches that continued for around 2 weeks (lessening over time and only the odd one left now). GP says no point in referring to neurology right now as A and E recommended because in their experience they just receive a list of medications to try which I don't want to do now as we want to conceive soon. In my previous pregnancy I had no migraines and only the odd one for 2 1/2 after. He said it seems like a natural solution and I must agree with him 😅
I've tried betablockers in the past. My blood pressure is naturally too low for some other migraine preventatives.
My husband is irritated and worried about the whole situation and feels I should be focused on getting to the bottom of it but I just don't have the energy. I feel broody and optimistic that the migraines are hormonal.
Add info:
DH is very helpful and does more than his fair share in the household
I love work and it's the least stressful job I've ever had
While not well off we don't live month to month (just need to put away £1000 more to be comfortable on mat leave and have extra to maintain lifestyle once returning to work)
I'm close with my family and my in-laws without drama
My DS is energetic but really good
Scans in the past showed nothing concerning and in general my migraines are following the usual pattern
4 close family members have been diagnosed with conditions under FND
UK based