I am relatively new to this site. And I am overwhelmed by the stories about Mirena causing all this trouble.
Such a relief to finally have something to go on. My story is long I apologize in advance.I hope I will hear from people with similar extreme reactions. I am having my Mirena removed next week in the hospital through Hysteroscopy (with camera) after two failed attempts to retrieve the treads by both doctor and gynecologist. The gyn said it is still where it should be after she did an ultrasound.Can it be embedded or will you see that on ultrasound as well?

My Story:

I am into the 4th year of my second Mirena and in hindsight my problems started after the second was placed 3 years ago. My first I got in the States, the second when living in Europe.
My most severe debilitating problems actually relate to my head (neurological).
I haven't been able to drive on the highway since 3 months now. Very annoying. My real problems started around 8 months ago when I had an pneumonia that was not treated. Ever since my problems have been increasing up to a point where I will at times be unable to function normal or at all.

I haven't had a period in 8 years, and although my symptoms are definitely cyclical they do not return on the spot every 4 or 5 weeks. Once I enter a 'period' of sensitivity, as I call it nowadays, this 'period' can last for 3 to 4 or more weeks and will peak at some point (I will be sick, depleted and miserable by then, not even being able to leave the sofa) after which I will start to feel a little better till the next hypersensitive period.

I have seen an ENT specialist,neurologist, and internist. Have been screened for Addisons disease, menopause, Menieres disease, Vestibular migraine, Lyme Disease Vit.B deficiency, renal failure, thyroid etcetera. Blood tests were all perfectly fine. I have had a CT scan and an MRI of the brain, both showing no problems what so ever. Does anyone recognize these symptoms? specifically the ones related to the attacks in my head? (the rest I have spotted here and there in other peoples stories)

My Symptoms:

1. Tinnitus and pressure in the head (first symptom around 3 years ago)
2. Itchiness all over body and tiny bumps, up to the point where I would scratch open my skin in several places. (that symptom went away after some weeks and has not returned except for itchiness on the back and chest area with little pimples)
3. severe stomach problems on and off. So severe that I can't breath from pain that radiates towards my back. No heartburn.
4. Vertigo episode (2 x)
5. Muscle twitches
6. Nightly sweating
7. Weird infections An episode of Gout on the foot and 2 Breast infections (My youngest child is 9)
8. Adenoid fibroid in left breast
9. Attacks in my head that make me feel like I am having a stroke. It starts with a unpleasant tingling in my brain that will build up and increase in the form of pressure to a point where I think I will pass out.(BTW: this never has happened)It can be compared to the short push of adrenalin you experience when you get a jolt of anxiety when somebody or something scares you. However the feeling of my attack is much bigger, overwhelming literally and last much longer. Afterwards my brain feels feverishly hot although I never have a fever. When I have a bad episode it feels like having contractions in my brain. Sometimes I have small attacks lasting from seconds to a few minutes. Sometimes it would last a lot longer ( whole days on and off)The funny thing isthat the earaches that precede an 'attack'apear on the left side, the prickling and building wave of pressure focusses on the right side and then spreads out.
10. These attacks do sometimes happen at night while I am asleep, I wake up being terrified.
11. Earaches, have been there for months and actually increase prior to an attack. Itching inner ear.
12. Headaches after these attacks that would last for weeks on end. As if I had a concussion. Head would feel heavy I would have trouble keeping it up.Extremely tired afterwards.
13. Constant dizziness,foggy feeling, slight problems with balance.
14. At the height of the worst episode my uterus would feel very unpleasant,fluttery and in general sickly.
15. Migraine like problems. Extremely sensitive to sound, smell and light, colors and patterns. All these could bring on small or big attacks.I can't sit at a computer for long then or it will bring on an attack.
16. pain in joints (hand, elbow, and knees on one side)and also nerve pain along that arm between elbow and wrist.
17. Pain in flanks and lower back pain.
18. stiff neck and shoulders, bending over makes my head swell up as if the blood circulation is obstructed.Painful skin on my head. touching it in a 'attacks period' is unpleasant.
19. Heart palpitations occurring out of nowhere, or missing a beat and then booming an extra beat.
20. On and off trouble with breathing, having to suck in a large breath as if you can't get enough oxygen in normally. When this happens I can hardly climb the stairs
21. At times extremely tired, total lack of energy, feeling so incredibly sick as if I am having a giant flu. No fever though.
22. Weight loss, loss of appetite,nauseous to feeling like vomiting but I rarely do.
23. Feeling of nervousness. Can occur without any notice and without any reason.
24. Teary eyes, I wake up sometimes with a cheek that is wet.
25. Arms and shoulder go numb in my sleep even though I sleep on my back.
26. Prior to falling a sleep a drunk feeling a vertigo like sensation that is accompanied by a racing heartbeat.
27. Not being able to drive a car on the highway. When I am in a bad period I can't even drive a short distance. When I am feeling better the highway is still no option though; it seems that I get attacks when speed increases or by the movement of things flashing by and I am a little afraid to drive at the moment,I had to put the car on the side of the highway last time after an attack that was followed by a racing heart. I thought I was having a heart attack!Needless to say that all this has made me feeling very insecure.
28. I never had any cramping or belly pain.

I hope that the removal will bring instant relief, but reading your stories I am afraid it will take much longer than that to feel better. Thank you so much for taking the time to read my story!